My first chair

Well, I did it.

I've been battling with myself about this for a long time and I knew the time was coming.  I began the adventures of getting my first wheel chair.  It's not something I need right now and not certainly something I'll need all the time, but as the weather starts to change, I knew the time was coming.

I loathe the idea of using a chair, but there are times when it feels like we could do so much more if we had one.  Sounds kind of weird to me, but it's true.  Imagine being able to go farther or to different places because we weren't held back by me?  I would have thought life would be more restrictive with a chair, but I'm starting to see the possibilities.  I also like the thought of not having a heart attack during an ice storm ... just have to make sure my husband doesn't fall pushing me!  Don't want to have to get his and hers chairs.

I know this might sound weird to the rest of you, but I didn't know "how" you got a wheelchair.  I didn't know the logistics, but I also didn't and still don't know how to "do it".  Do you just go get one?  Do you tell people you're getting one?  Do you just show up with one?  It's a very emotional and private thing for me.  I'm embarrassed and afraid of what it will mean.

So .... I talked to an OT from my area and she helped me get the ball rolling.  She gave me the name of a few places just so I could go and check out the goods.  I got a few quotes and together we filled out an application for Muscular Dystrophy of Canada.  Checking out chairs was like slowly pulling off a bandaid for me.  The first time we went, it was just my husband and I.  I couldn't sit in it.  I didn't want to.  I did like a hot little red number I saw, but I wasn't ready to picture myself in it.  Leaving the store, I knew I was either going to start laughing or burst into tears.  I opted for turning up the radio and singing really loudly.  The counsellor I have been seeing said that small steps are often the way they get people to over come their fears.  Yeah ... first step done.

The second trip was more fun.  My husband and I brought our oldest daughter and my niece.  What isn't more fun with curious little girls eh?  They inspected all the chairs and encourage me to get the plus sized chair so we could all sit in it together.  I'm sure my husband would love pushing the three of us around.  My daughter was a little confused by it all and seemed upset.  I let her ask questions and I think she understands it now.  It will be so fun to see what my youngest thinks of it.  She'll totally think it's a new toy for her.

So, we decided on the little red number and hope to have everything done in time for the snow and ice.  I'm learning that it's not there to be used all the time or take anything away from me.  It's going to help me when I need it and make my life more rewarding.  I still haven't really told anyone in my life about it.  I don't really know how to.  It's not common conversation ... "hey, so I got a wheelchair".  I also don't want to show up places with it and have people starring at me or asking the same question over and over like when I started using a cane.  I guess we just field it as it comes.

So, now to come up with a name for my little, red transport chair .. ???

I don't know what to do

I think it's so important to be an optimistic person.  You certainly don't want to walk around with sunshine coming out your butt, but it is important to try to look at the positive.  I think looking at the negative all the time would take away so much of my drive and motivation for the future.  My concern is ... what do you do during those times when you struggle to keep it all together?

About 4 months ago I started feeling different.  After writing my first book about my family's experience with Autism and MD, I started to struggle.  I think it was the first time that I allowed myself to understand what was going on.  Since my daughter's diagnosis, we have been in "problem solving" mode.  There wasn't much time to think about what had happened or what will happen.  Even for myself, I've been diagnosed with MD for 12 years and I am just now accepting it.  Is that weird?   I don't know.  I think denial can be a really good coping mechanism.  I guess I thought if I was a good enough person, I could beat this thing.  Sounds silly, but the subconscious can do some pretty interesting things.

I decided to see my family doctor.  I didn't really know what to tell her.  Was I experiencing depression? anxiety? or was it just part of the grieving process?  It's been 4 months.  Whatever I'm going through, it's getting a little better.  I think.  We've talked about medication ... doesn't have to be a long term thing and the decision is left in my hands.  Should I take something to help me through this stage of my life?  I don't know.  When I keep the wall of denial up, I end up feeling lonely.  When I lower the wall, I feel so much anxiety and fear.  Ready or not, life is going to happen.  I don't know what to do.

Living in this world

Let’s be honest here.   When we meet someone for the first time, our brains are in overload.  There is a lot of subconscious judgement that takes place.  I believe dominance is established within 5 minutes of meeting someone.  I once met a lady who was so threatened by me.  She was studying to be a social worker and because I already had a degree and was working on my masters, she pushed and pushed me into a corner until I admitted to her that her degree would get her farther.  Dominance.   I guess she needed to feel that between us.  I thought it was silly.  I understand now how it feels to be in minority and to feel these unspoken social hierarchies.  I don’t for one minute think that anyone looks at someone in a wheel chair and says or even believes that they are better.  No.  That would be socially unacceptable.  But it’s there.   I did an experiment a few months ago and asked people to be real about the following question, “what do you think when you see someone with a disability or someone who looks different’?  I so appreciated the honesty.  The answers varied from, “I feel more comfortable about my own flaws” to “I’m just glad it’s not me”.  I don’t feel “judged” by people for having a disability, but I certainly feel the hierarchy.  When I sit down to talk with someone stronger than me, more educated than me, prettier than me or more outgoing than me, I automatically take the lower position on the totem pole.  And you know what makes it worse?  Someone who officiously tries to help.  Yes, it’s kind and often necessary, but it no less makes the gap of dominance bigger.  You are undoubtedly the winner.  I can’t top that.  Sure, I can try by impressing you with my character and integrity, but in my mind, you win.  This thinking may be wrong, but digress with me.  You have a doctor and a patient.  A doctor is a servant to the people around them, but it is definitely a dominant role.  Even nurses respect the authority of the doctor.  This is just the hierarchy of life.  When a doctor is helping me dress, I know that I would be treated with respect, but the person of authority and the person of vulnerability have been assigned very clear roles.

My experience lies in the area of physical disability.  Someone else’s experience lies in a different area.  Like anyone else's struggle, there are conditions that someone with a disability cannot count on when living in an able bodied world.   I point out that I do not blame any able bodied person, but these are things that I have seen my friends, family, acquaintances and strangers take for granted.  Of course, none of these things are a reason for anyone in a minority to have an unfulfilled life.

Being able to get out of a booth or chair at a restaurant

Having a washroom available that they can use

Purchasing items on the bottom shelf at a grocery store

Wearing shoes

Not being starred at … unless their skirt is tucked into their underwear.

Generally assuming that a compliment is merited and not awarded because the standard is lower.

Falling calls for a normal response instead of looks that suggest a poem be written about the tragedy that is your life.

Being able to try clothes on in a change room

The option for the “giving” side to balance the “receiving” side and all the positive feelings of worth that go with it.

Choosing  a career based on desire, education and skills.

Choosing recreation based on desire and means.

What we need to understand is that we should all be servants to each other.  People in places of authority, may it be as a helping friend or a position in society; we all need to be aware of how the other person feels. This role can change.  In some situations, I feel like the person who is dominant and I too have to be aware of what “rights” that brings to the relationship.   My message is for anyone who has a position of authority whether or not they believe that they are in that position .. earned or unearned.  Doctors, occupational therapist, social workers, teachers, police, bosses, people with wealth, good friends or members of society.  When someone needs you on any level, they are allowing you into a place of vulnerability and there is an unspoken hierarchy.  What I believe to be a place of privilege.   I don’t think it’s a bad thing.  I think it’s something that should be protected.

Should I do it?

It's Canada Day!  I'm proud to be Canadian.  I did live in Virginia for awhile with my family, but I am Canadian.  Born on this soil.  Today, many of my friends are out at their cottages, at parades or planning a bbq. I really should have thought ahead and planned something.  I sometimes find long weekends .... I don't know .... sad?  It feels like a reminder that I can't do what other people can do and take for granted.  Part of the reason is our little "Tee".  She is almost 4 and severely autistic.  She's been having a hard time when things aren't "normal" or part of her routine.   I could only imagine going to a parade.  Tee trying to run away or getting upset when she can't join one of the floats!  That leaves me and JJ to fend for ourselves as Matthew tries to keep Tee safe  ... not an easy task in a crowd.  What if I fall?  What if someone bumps me?  What if there is no washroom I can use?  What if there is a little step I can't get up?


Does anyone else out there worry about those things?  As Tee grows up and learns to handle things better, I will have more opportunity to experience these kinds of things.  Question is, how do I learn to enjoy them?  How do I experience day trips, carnivals and concerts without thinking about all the details?  Perhaps this is just part of the process of learning how to live as someone with a disability.  Learning how to ask for help and finding all the resources out there.  What do you do?

Ready or not

Have you guys ever had to face a task so daunting that it leaves you feeling sick?  Or know that you have to do something that you are dreading to the point of choosing denial?  That's me right now.   I've been writing for awhile now.  Often choosing funny stories about my kids or an awesome new project over the reality of what the future holds. That sounds all dark and stuff.  It's really not.  The future can hold lots of exciting things!  It's just time for me to stop living in denial and face reality.  My future isn't going to look the way I thought it was going to.  That doesn't mean it's going to be bad ... it's just going to be different.

When my husband and I were dating I told him that I had MD. I had the brain knowledge to understand what that meant.  My husband is a science-minded guy so he definitely understood.  Problem is, no one thought to tell my heart.  Over the past 10 years and especially after the birth of my second little monster, I watched my body change.  I went from having a hard time going up stairs to standing at the bottom of two steps trying to will myself up.  I was unsuccessful.  That's okay, plaster a smile on and keep going.  That was harder to do after my last Dr. appointment.

Sitting in my Dr.s office knowing that my strength testing was dangerously low, I knew things would never be the same again.  He told me in the most sensitive way he could that it was time to accept that this is going to happen and think about using a chair when I'm out.  What a blow!!  So, here I am learning to face reality.  I like being active.  I like trying to be healthy and strong.  This is not part of my plan!  Every time I think about it, either a wall of denial goes up or a stream of panic enters my body.  I'm not ready for this.  But ... ready or not, eh?  So, begins a new chapter in my life.  The chapter of acceptance and the beginning of an incredible journey.