Can too much good be bad and too much bad be good

FSHD can often be a guessing game. Particularly a couple decades ago when research hadn't yet advanced. Now we have more information, more real stories, more research and more possibility.

But with new knowledge comes new questions. 

There is a continuum and as the condition progresses you change your place on the continuum. But often, the advice doesn't change and it should.

As you can tell from previous blog posts there is a greater belief an individual can change the outcome of the disease themselves. Optism, confidence and a bit of bravado creates a combination that drives the individual to feel like they have the secret. The can change the game.

Usually this includes supplements, exercise, holistic approaches, Ayurveda, chinese medicine, stem cell treatment. Anything that offers a glimmer of hope, we open our wallets, focus and channel our energy and ambition to work on stopping this monster.

Outside of the fact in can drain your wallet, it gives you something to do and puts some control in your hands.

But it's already written, most of it is written. While exercise, nutrition and many of these approaches can help your overall health you have no idea what the long term effects will be. This is something ever present when you hit the realization you've done everything in earnest and the monster is still at work.

At this point, you wonder if continuing exercise, supplements and everything else is really causing more damage. Not only to the body but to the mind. Crushing hope is one of the most damaging things.

I'm at this point. I've lost the ability to do simple tasks. And other 'easy' tasks feel like climbing a mountain. By this point, I'm in tune with my body. Getting out of bed uses all my weak muscles and I need ligaments and tendons and joints to work extra hard. It feels more harmful than helpful. Some researchers agree. There isn't enough research to make it definitive.

I'm moving more into preservation of the physical body and nurturing the spirit. More time in meditation and prayer to keep my stress low and less guilt about not doing a regular workout routine. I'm keeping it to range of motion stretching with active assist.

The Law of Inches

Like many people with unique lived experiences, I volunteer much of my time telling others about my perspective around accessibility and disability.

I have had the pleasure of meeting the most interesting people who also share their stories. Like any equity group, no one opinion represents the group.

In one discussion, a visually impaired man told me how those who are blind and use a white came or guide dog follow routes from memory. So when something moves, like detours during construction or menu board on a sidewalk, it completely disorients them. 

Makes sense. If you're going by memory, counting steps or guiding by surface. The things non-blind people wouldn't consider.

It's similar for people with FSHD as we progress in our disease. Although I think it makes less sense to non-FSHers because an inch literally can make the difference between completing a task or not.

There's an assymetry to the disease so muscles weaken in different places at different times at different extremes. It often feels like walking on marbles or on a tight rope. One inch one way or another and that muscle group collapses.

It's the same with furniture, clothes, dishes and everything else in daily life.

I know some who use masking tape to mark off where everything needs to be, how wheels on a wheelchair needs to line up. Her whole house is marked up with lines.

It adds a whole other level of constraint. Not only for the person needing everything to be just so. But, for the people around them. 

I know it's hard when you are caring for someone with FSHD. Their inner strength, resilience and problem solving don't align to what might look like OCD or just being too demanding.

I hope you, as someone who is around someone with FSHD, will fire up your empathy and patience. 

Trust that the Law of Inches is about independence and freedom.

Finding inspiration in the most unexpected place.... my blog!?

Well if that just doesn't beat everything. 

After a wonderful catch up lunch with a friend who shared his blog with me, I was reminded about this old thing! 

Clearly, I've been neglectful of late. It's not due to lack of events or epiphanies. Just mostly a lot of navel gazing in between trying to live instead of just surviving.

Going through my past posts, I remembered what a comfort writing was. How much I loved being 'in the zone' and letting my thoughts, emotions and beliefs just flow cool breeze on a hot day.

Lately, I feel more like I've been in a storm. Thoughts and emotions just whipping around like leaves, broken branches and patio furniture. The rain pelting down every which way feeling like little sparks on your frozen skin, thunder like god is trying to get you to understand something crucial and the sharp veins of ightening to remind you of a power beyond you. And, when it's over,  there's a feeling of rebirth in the calm and hope when the sun takes the place of the dark clouds.

Then I remembered: I love storms.

I don't like long posts. So stay tuned for a few more posts on the more stormy parts of my FSHD journey.

I will leave you with one bit of advice : start a journal. 

Record it, write it or film it. Just do it. You have a great story to tell, even if you think you don't. If you have a journal, take time to go back and read it. I had myself in tears reading about some of my own stories and it reminded me of how much I've been through. It made me grateful but also made me realize how strong I was during difficult times and that I could I be strong again. 

The bear on the mountain

https://vm.tiktok.com/ZMjBWPEEg/

I saw this video and thought it's a perfect illustration of my journey with FSHD.

We try so many paths...get close..slip... follow in someone else's footsteps...slip... but resilience, patience, perseverance and having people stand by you wins in the end.

Then I slipped off the mountain

I haven't written in a long time, which isn't to say I haven't been thinking about it. I have been thinking about a lot of things as I slowly and desperately try not to slip too far down this mountain I've been climbing.

Having FSHD is such a long and twisted journey. In fact I've come back to this draft in 2022, realizing I started it in 2018.

Time passed quickly during covid and it's a good reminder of how quickly you can go from stable to not. It always feels like your muscles are progressing faster than you think. If someone had asked about how long my fast progression has been, I would have said 2 years. But, clearly it's been more than that.

One FSHD researcher describes the progression of FSHD like a rope that's being cut thread by thread. The thing people don't realize, is that with every thread that's left, you consider yourself still mobile. It's that last thread. When that last thread gets cut, that's when you feel like it happens fast. You don't feel all the other threads that are being cut. It is the difference between being able to do something and not. No one likes, 'not'.

In the last five years, I've gone from walking with a walker when needed, to being in a wheelchair part-time and not being able to walk without assistance. 

It might have taken 50 years to get here, but it doesn't feel like it.

I remember the look my friend Ann gave me when we talked about FSHD. When I met her, she was already late in her progression and in a wheelchair. This of course does not in any way describe her spirit which was very robust. I was at the beginning of my diagnosis and journey into FSHD. 

Like many people who are diagnosed in their twenties and have mild symptoms, we think we can beat it. We think we are going to be the ones with the mild progression who can fight it through exercise, supplements, naturopathic treatments or anything new that shows promise. Ann looked at me in a way that was knowing, but she wouldn't let on. No one wants to break anyone's spirit or bruise anyone's hope in any way. But she knew how the journey would go, because she had already been there.

I'm sure she would be very optimistic by the research and investment that has been made toward a cure for FSHD. We have come such a long way from where we were 30 years ago when I started my journey.

Until that time comes, I will continue with whatever comes up that I am still able to do (like yoga, meditation and getting out as much as possible) while having the humility that is on me now. This part of the journey is all about keeping the spirit whole. It is sometimes the most difficult part when having a progressive degenerative disease involves being in a perpetual state of mourning.

It's a lesson in managing expectations and the ability to adapt. It's a lesson in learning how much is out of your control. My new mantra is 'live.learn.accept.adapt.repeat.' I'm still in the game, even if it's on the sidelines. I'm still moving, even though it's slower. I'm still happy, even though I am sad sometimes. I'm still looking for new passions, even though they are in unexpected places.

Inhale courage and exhale fear. Remember,

'live.learn.accept.adapt.repeat.'

Until next time... and there will be a next time. 

 

Love and FSH Muscular Dystrophy

So this is an appropriate day to post something on love and FSH.

Love and relationships are hot topics on FSHD online groups and chats.  I think we all feel having FSHD is a guaranteed bad luck charm on love.  I  know I have used it as a reason for failed relationships and not following my marriage time line. I recently realized it's not always the FSHD.  It's just the way love goes.

I read a wonderful article from Kristin Duquette on love and being disabled (http://www.mobilewomen.org/2015/02/im-disabled-20-something-and-believe-in.html?m=1) We have as much love to give as anyone else.  But we often forget we are worthy of the same love.

Not sure if it is my personality or the disease that made me feel unworthy of being loved.  I think those with disabilities feel like they are not whole,  including their hearts.  Which of course couldn't be further from the truth.

It's another journey we face and God be with those brave enough to stand by those of us who take awhile to figure it out.

On this Valentine's weekend I got engaged. It is still sinking in. It's becoming apparent that being loved is as much about loving as letting yourself be loved. 

I find it overwhelming.

Not just the love from the brave soul who signed up for the FSHD adventure with me.  But,  the honest love from those people in my life who I have shared this news with.  In a world so jaded, cynical and crazy busy,  I feel I very real love and happiness channelled to me.

I'm trying to take it all in.  It's scary but I find I am enjoying feeling 'young and in love'.  It's nice to have that feeling of love without the memory of heartbreak and pain.  It's nice to not worry about how the FSHD might impact the relationship.  It's nice to just enjoy the moment and let it all in.

On this Valentine's Day I wish you all (especially my FSHD champions) a world of love from all those around you and more importantly,  the strength to allow yourself to be loved.

The Run In

Last weekend, I bumped into my ex at a party for the daughter of a mutual friend. I hadn't seen him "face to FSH" in a couple of years.

He knew about my FSH when we were dating and was the relationship in my life when I was in the "should I risk passing on FSH to my kids? Should I have kids?"

At the time, I hadn't yet experienced the depths of FSH progression. Even though we all know it's a progressive condition and everyone tells us it's going to get worse so prepare yourself, I still thought I could "will" it away. Mind over matter...pray... have faith... miracles happen... this is as bad as it gets... All good sentiments. But, FSH is totally on it's own agenda. (Reminds me of the saying "if you want to make God laugh, make a plan").

He was of the view it would be selfish to have a child who could suffer because of my decision. I wanted children so much. It was one of the few things I knew I wanted from as early as I can remember. I had a big extended family so I wanted at least five kids.

But, God had a different plan.

We spent a lot of time catching up on each other's lives. He asked about my FSH of course, and how it was progressing, what I was doing to deal with it. Given I had my walker with me, it was hard to avoid the elephant in the room!

In the years that followed our breakup, and sidelined plans of marriage and kids, I realized we weren't so different.

We both had good jobs, our own homes and our own challenges and successes. We both got married to other people we loved. He had his two and a half year old at the party and I had my stepson, niece and nephew there, so we both had the family we craved and I had as much fun and joy with my kids as he did with his. Probably more because I got to sugar mine up and send them back to their other homes!

In the end, it reminded me that things may not work out the way you plan, but they will always work out in the end.

What's in a name?

A new day

Last month I reached a new milestone in my FSH journey, a power chair.

After falling a number of times in a very short walk, my legs turned to that familiar jelly feeling and I couldn't stand. It took a couple of days before I could stand again but the feeling of vacancy in my body would stay, as would the fear of never knowing when I would fall again and why. I was at the mercy of the unpredictablity of this disease.

For many of us, the ability to find solutions and new ways of doing things gives us a feeling of victory. Every small victory over this disease is huge.

So I can't fix my legs, which feel like they are shredding at a rapid pace, but I can keep my independence a little longer with a power chair.

It's quite a humbling experience to see your reflection while you are on one of these. Forget looking sexy or elegant. Your flesh spreads out in the middle, you inevitably lean to one side or slouch, often you can't keep your legs together and getting through elevators and doorways are a performance.

Like so many people with disabilities, the frustration around the lack of accessibility and awareness of our every day reality, is bubbling up.

In fairness, people with disabilities take a long time to come out with their condition. They often believe their differences are an annoyance to others. They..we.. believe we don't have an equal voice or equal worth to others.

But we do.

As I crawl back into my solutions based instinct, I have learned 1 in 7 Canadians self identify as having a disability. By 2036, that number will grow to 1 in 5. Yet, the solutions offered by government, business and community leaders are still too basic, far too narrow in focus and lacking leadership and innovation. Creating an accessible and inclusive society is still not enough of a priority.

Barrier-free cities and universal design are not new ideas. They have been around since the 1980s. Yet the work being done is still around basic accessibility, like government buildings and services being accessible. Really? In 2017, that's what government considers leading the way?

Clearly, we are still decades behind on getting where we need to be. But my hope is our voices will become stronger. The only way to make change is to speak up, be heard.

Every voice makes a difference.

Are they failing me, or am I?

I'm writing this, lying in bed for the sixth week in a row. Once again, humbled by my FSH. This time, a fractured bone and a fractured spirit.

While I deal with the realities of the disease, I would normally be grateful for getting away with a minor break and the ability to work from home. Possibly even steal away some time for last minute wedding plans.

But I find myself dwelling on the fact that my latest fall practically had people around me walk over my blob of a body. They probably thought I looked ok so I must be ok.

Or the guy who pushed me out of the elevator because he was in a hurry. He probably thought I was just there as another hindrance from him catching his bus, not that I was walking slowly because I was petrified of losing my balance and falling again. So terrible that he might have been late.

Is it me or are there way more people who are walking looking at their phones, no regard to the people they are knocking over. A quick 'sorry' but please, I need to return this text.

Or those who don't think I am fun because I can't play sports, or do all the things that they do so easily. They think I should toughen up. They say if my mind and spirit is strong I can do anything.

I used to say that to people, but now I know your attitude can't fix what's wrong, only how you handle it.

I wake up trying to inspire, trying to lead, trying to be strong, trying to help others. But,  I am getting tired of my own rhetoric and others are tired of listening to me explain what I am going through.

Maybe I need to give myself a break, we all need to do that. With a stressful job, health issues, financial challenges and a wedding to plan, re-plan and re-plan. I think I will take the time to reset my goals or maybe move the goal posts a little.

Giveth and Taketh

As I plan for the wedding,  the FSH is rearing it's ugly head. Sudden rapid periods of deterioration have left me challenged to bend at the core or any joint. As much as I am happy with my love, I wonder each day if I am doing him wrong.  What will be left of me and this frail body by the time we say I do?

I worry each day if I will be able to walk down the aisle or hold my bouquet.  I try to stay positive and try abd think past my reality.  I know FSH will fight me every step of the way.

Extreme weather and FSH Muscular Dystrophy

Ah,  Canada. The country that I adore. You sure know how to do extreme weather!

I am lucky enough to live on the west coast of Canada,  the most spectacular place on earth. But I am spending the week in Ontario where it seems Mother Nature has spent a little extra time

It's freezing.

I arrived to - 5 and it's dropped to - 40. So pretty darn cold.

I find extreme temperature does not bode well with my FSH.. Or maybe I am spoiled with the mild temperature of the west coast. But,  being here has stiffened my muscles. And, has made me fear every step in the icy and snowy sidewalks. But I keep going, like another mountain to climb. Another challenge to conquer!

I have also discovered walkers don't do well either. The wheel slip in the ice like on a skating rink. I don't know how others do it.  I applaud you. Talk about an extreme sport!

Congrats to all those with a disability who weather all storms,  including real ones. You are champions.

FSH Muscular Dystrophy: I am a hero... shhh.. don't tell :)

Another late post. Hoping to get better at this now that I have installed the Blogger app on my phone. Technology is grand.

I wanted to update those of you who are following along on this journey with me... thanks for that by the way. Adventures such as these are always better with others. 

The complexities of this disease leave those who have it, and those who are trying to care for people that have it, confused and frustrated. You are not alone. This is surely a steep journey with lots of bumps along the way. But the view can often be enlightening.

It is only recently that I realised that this disability makes me, and everyone else with a disability, a hero albeit a reluctant one. We feel that being born with something that you have to live with isn't heroic. But now, I believe it is.

I often thought I had to do something extraordinary to be inspiring if I had a disability. I read about amazing people who have turned this disease into a great opportunity to be motivational speakers, become public advocates and lobby governments for change. They invent things and break boundaries and I didn't think my getting up each day and living meant much. But it does. 

A person with a disability faces their own struggle each day with each task. I know now that the determination not to give up, not to just stay in bed is actually a really big deal. When walking up a driveway is like hiking a mountain and lifting your coffee cup is like lifting a boulder, it is a big deal to get up, face the world with a smile and move past all the hurdles each day brings.

So I am going to give myself a pat on the back and quietly accept I am a hero too. Just like the thousands like me who do not know what each day brings with their disability.

Since my last post, I have experienced a great deal of muscle loss in my legs and arms. My left arm doesn't function properly and I can't bend at my knees well because of the muscle loss in my calves and thighs. FSH keeps you guessing, you never know what you can't do until you try to do it and realise.. well, you can't. But on the upside, I am still independent, still working and still doing as much as I can.

On the research front, I recently attended the Friends of FSH research and patient meeting at the University of Washington. I heard from a number of leading researchers in FSH. These are our FSH champions and I have no idea where we would be without their dedication to unravelling this disease. They are moving forward in leaps and bounds in my opinion, studying drug therapies and creating viable mouse models and learning more and more about the evil DUX4.

Until next time, stay happy and at peace. You are heroes too!

Long time no...fall.

Well, it's been a bit of time since my last post. I am happy to report, I haven't fallen since. 

What a milestone.

I am sure that isn't nearly exciting enough of an update.

I can tell you that I have been adapting well with the walker at work, which has been an interesting adventure. People still wonder why I need it as I am not using it all the time. But they are scared of me running over their toes, so I do get my way in meetings.

I have started organizing my first fundraiser. No idea why it is so anxiety provoking for me. I hate asking people for money let alone anything else. But I think of all the new FSH champions I have met and I try to focus my asks for them. It makes it easier.

I'm back in the relationship world. Very ironic how life works out. Getting back in a relationship with someone when you are at the worst part of FSH... (to now). Well, whatever happens, I have learned that I am strong enough to handle it.

Progress of the disease, well I am still fairly independent. Stairs, hills and uneven surfaces are still not my friends and I have had to turn back at one or two events because of inaccessibility. I am gracious about it even though the event organizer is mortified. It's a learning experience for everyone.

The pain is manageable but I have started an anti-inflammatory diet which has been helpful. Anything to keep the pain and progression away until there is a treatment. 

Ah, a treatment. Still looks promising. I hope it's in time.

Until then I have been blessed with a wonderful, quirky group of family and friends who make this journey worthwhile. Thanks to all of you!

The Silver Lining

Yes, it sounds cliche I know. But for this post, I have to share some cliches, or fortune cookie wisdom, as I call it. No bad thing should ever go without a good thing taking place or a lesson of some kind, hence the silver lining.

Sometimes you really have to search for it. The key is that you should go search for it. Each thing, even a bad thing, leads to something else... often something much bigger. Some call it the butterfly effect.

In any case, I broke my wrist in September. This may not seem to be a big deal, lots of people break their wrists. But for someone with FSH, it can lead to much more, as I soon found out.

How I broke my wrist is stupid and small and who would have thought something so insignificant like trying to move a fan could have such ripple effects, but it did.

First of all, let me say that the fan in question should not have been there. Lesson #1: Don't put off for tomorrow what you can do today. I had been meaning to get rid of that fan for the past two years. But kept waiting for the perfect replacement and was too lazy to dispose of it. I should have gotten rid of it. But I didn't and so in trying to move it, I tripped on one of the awkward "accident waiting to happen" legs, and tried to break my fall on the unstable stem of it which broke in half, sent me down to the ground where I landed on my wrist and shattered my radius bone.

So now I'm on the ground in the unceremonious "I've fallen and I can't get up" mode. Phones nowhere in reach and all alone. Lesson #2: Women are like tea bags, you don't know how strong they are until they get into hot water. So I regrouped and bum-walked my way to a phone, pulled a McGyver move with a broom handle and managed to open the door. 

The rest is the usual trip to the ER followed by a cast followed by an xray that said the cast didn't work followed by surgery followed by heavy drugs and a the life changing moments that ensued.

As I said, broken wrist.. not such a big deal. But when you have FSH and are at the point in your "adventure" where you need both hands to transfer from seats, this is huge. Seats, by the way, includes toilets and the car.

Imagine that. Now I had to get someone to lift me off the toilet at the hospital because I was stuck. Embarrassing. Lesson #3: Always have clean underwear and shave your legs. OK, that second part was just for the girls.

Talk about your independence gone, in the snap of a finger. Lesson #4: One moment changes everything.

Thankfully, I had not hastened to sort out some mobility issues at home in anticipation of what may come. Lesson #5: Do all you can do while you can.

So I was, in fact, able to go home where I stayed for the next eight weeks. Eight long weeks. Thank god I was able to work from home or I would have gone out of my mind. I had to get my mom to move in with me which was really hard for me, but I think it finally made her feel like she was doing something, anything to help me. For me, it was humbling. Lesson #6: It's ok to ask for help sometimes.

Sadly, the laying on my back, the trauma of the fall and the surgery for which I was wide awake, the effects of the nerve block and far too much time to think, left my FSH in a what felt like a rapidly progressing state. My arms got weaker, my legs got weaker and my core got weaker. I had to get a walker and a boosters for the bathrooms at work and at home. I couldn't get past imagining a life of asking for rides, waiting fro help and no freedom. Lesson #7: Suck it up. It could always be worse.

I was so worried about what people would think of me in this new state. The walker, the booster, the limping... but I got to work and was embraced by all those I left. And was greeted by another colleague who, sadly, herniated a disc and had to use a walker after a five day hospital stay. Lesson #8: Shit happens to everyone.

So I am back at work and struggling a little, but I am back at work. More importantly, I am back to spending time with friends and doing some of the things I enjoy. I had to buy a new car so I could get in and out easy (how painful was that... not!) and have my VIP parking pass (disabled sticker) which really came in handy during the busy shopping season.

Most of all, it reminded me of how resilient I, and all those with FSH, are. I learned I had developed a pattern for when bad things take place. I cry, I mourn, I take a deep breath, I pull up my socks, I get on with it. Lesson #9: Life is too short to be on the sidelines. Get in the game.

And, my parents who as you know from reading previous posts, found some strength too. The broken wrist and all that came after it moved them slightly out of denial and thankfully made them realize, I'm doing ok. Lesson #10: Reality is what you believe it to be.

So out of all that came some good. I could do without the ugly 3" scar that came along with this. But I am grateful for the lessons it reminds me of.

Gone.. but not forgotten

Sorry for the delay in posting, I can't believe it's been a year!

Lots of updates and insights, but you will have to wait a little longer as I am nursing a broken wrist. Which, for someone with FSH, is much worse then one might think.

One handed typing is tough.. so I hope you will stay tuned as I am on the mend.

What a year.. with the best yet to come.

This has been quite a year, hasn't it? I wanted to thank those of you who sent your kind thoughts and expressed concern around my last post. The boyfriend is doing well, physically anyway. Unfortunately, his recovery has made him restless. I wonder if that is the worst thing, the inability to do the things you want. Even the most basic things. The experience made me wonder about how much longer I have the ability to do what I want.  

In the last few months, I have seen the FSH progress more rapidly in my body. Or at least it feels like that... the same as when you get to the end of a roll of toilet paper. The end seems to come faster than ever.

I am struggling more now. With stairs, chairs, cars, you name it. It feels like parts of my body are clamped with a vice. But I would take that over the parts I can't feel at all. Nothing worse then not being able to will yourself to move.

But on the upside, and there is always an upside, I am happy. This is the time of year we reflect and as I do so, I can only see the support of my friends and family, the beautiful children in my life who remind me of less complicated days and the many outlets of hope and happiness I have discovered.

In the midst of change, I have chosen to take on an advocacy role with my FSH. This is the time where fear has no place. For all those people with FSH like me who have spent time quietly hiding their condition hoping if they didn't say anything no one would notice, I want to let people know of this condition. I want to let people with FSH know there is nothing to be ashamed of. The more mainstream we make this condition, the easier it will be to live with it and more importantly  find a cure.

This leads to the theme of this post, hope and a future without FSH. We are getting closer. This recent partnership between Fred Hutchinson Cancer Research Center and GlaxoSmithKline to develop therapeutics for FSH is a huge step in the right direction. There is no more 'if' for a treatment, now it's 'when'.

I will continue to write in the new year and continue to find new ways to spread the word. I'll keep you posted as this is a journey we share together.

This blog interrupted by ... life.

So it's been a few weeks since I returned from the FSH Conference in Atlanta. I was bursting with a million blog posts and couldn't wait to tell you about them. From the research, to the fantastic people to the inspiring next steps I hope to take, I was ready for an epic series of posts.

But then a bit of life got in the way. The speed bumps in your journey that remind you the unexpected can happen at any time and don't you dare think you can see them coming.

Last week, as I was settling back into life post Atlanta, my boyfriend had a violent seizure which resulted in a 3 am trip to the ER. 

I have never seen a seizure like that. My aunt has epilepsy and I saw her have a seizure, but it consisted of her stopping in her tracks, blanking out and coming back to reality within a minute. 

My friend's son had one, but it involved him blanking out in her arms and waking up not knowing what happened.

This one was something else. It looked like his life was being dragged out of him and he was fighting for it with all his might. My only comfort is knowing he was unconscious and unaware of what happened when he woke up.

The tests at the hospital resulted in less than great news of a brain lesion, more tests and him having to quit his job immediately.

The news left my body ice cold and in shock. A much stronger impact than when I was diagnosed with FSH, actually. Funny how that is. I guess it's different when you hear someone you love is sick. I guess that must be what my family felt when I told them.

He told me he was supposed to look after me, not the other way around. We planned our future with the notion that my FSH would be the big challenge and was he up for taking care of me and whatever my future held. We never thought about what life could have in store beyond that.

But life always has a plan.

I'll post on the conference soon. In the meantime, go hug someone you love. One second, or one speed bump, can change everything.

The things I miss. The things I don't.

I miss looking up when I walk. 
I miss holding the beautiful children in my life.
I miss running.
I miss dancing.
I miss being spontaneous.
I miss playing.
I miss competing in sports.
I miss walking up stairs.
I miss being able to exit a room with defiance.
I miss wearing whatever I want.
I miss my pretty shoes.
I miss dreaming about being a mother.


I don't miss taking life for granted.
I don't miss putting things off for tomorrow.
I don't miss believing I am worthless.
I don't miss believing I am weak and feeble.
I don't miss lying about the sum of who I am.
I don't miss seeing the glass half empty.
I don't miss worrying about the small things. 
I don't miss living in a small world with defined possibilities.

Splat!

I hope my posts about falling don't become too much of a recurring theme, but here is a stellar installment!


Last week, we had a big event at work. It included major stakeholders and executives from around the country.


I did my best to play my part and squeezed into the last suit in my closet that wouldn't cut of my circulation. I put on my ugly but sensible shoes figuring it would be better to choose function over fashion.


I spent the day walking back and forth from room to room, putting out fires and schmoozing at an epic level, something I don't do very well most of the time.


All the while, my feet were throbbing in my sensible shoes and my legs were getting heavier and heavier. By the time the event was over, I was trying to casually find a pillar to lean on looking classy rather than as rough as I was actually feeling.


Wouldn't you know it, just as I was crafting my creative exit at the wee hour of .. ahem.. 10 pm.. the president asked if I would take one of our senior executives upstairs to get her things. What a golden opportunity to connect with her one-on-one and make a lasting impression.


Be careful what you wish for.


I walked with her even though by now it felt like I was walking through sludge while my legs were being strangled by a medieval vice. My bones were rubbing against each other. My joints were aching and my back was as stiff as a board. All that from walking and standing in sensible shoes.


But, I kept going and tried to ignore the pain. I walked fast so I could keep up with this power broker in the company. I was holding my own in the conversation, engaging her in a strategic analysis of our latest initiative and then... you guessed it... I tripped on my own feet which I was dragging by now.


Splat, indeed.


I landed on my knee which left a massive bruise. She of course panicked and asked if I was ok. I was trying to think of something clever, but I figured getting off the floor would be a more useful endeavour. Since I couldn't get up off the floor, I crawled over to the nearest chair and pushed myself up all the while telling her to go gather her things and I would get her a cab.


I guess that left an unforgettable impression.


Thankfully she was too tired to dwell on it.


Thankfully I got out some intelligent information before dropping like a sack of potatoes.


Most of all, I am thankful I wore a suit and not a dress.