Charcot-Marie-Tooth: My Really Angry Phase

Welcome back to yet another chapter of my story. I know that the post says my really angry phase but that might be a bite of a misnomer, for yes I was angry for a period of time because of my CMT but I wasn't so angry that it came through everything, at least I really hope it wasn't obvious to everyone around me, but I still felt it. This really was from after the second surgery up through until I was about 32, so over all it was around 10 years that I remained angry, more than anything else, at having the CMT.

I was angry because of the fact that things that were once available to me, such as the programs to help me go to school where no longer available to me because I was now on SDI and SSI so I was stuck on government rolls until things could be worked out somehow. I was angry because I couldn't support my child on any minimum wage jobs that I could do. Working on my feet was something that shortly after my surgeries wasn't something that was completely doable, but there was still just being able to make ends meet on minimum wage was something that couldn't happen. Oh sure I might have been able to make the bills meet but not with child care on top of that which would have cost as much if not more than any job I would have been able to get. Anger built because I had to rely on the government when I wanted to take care of myself but had no choice for my child's sake. I only wanted to do what every other American family seemed to enjoy, weekends off with yearly two week vacations off somewhere that the kids will enjoy, and that is how I grew up and how I wanted my child to grow up, but that wasn't going to happen being reliant on the government like I was. I was angry because I had no choice but to rely on the government for everything I had from the food on the table to the clothes on our backs. I was angry that I had no choice but to take the charity simply because I had some blasted disability that seemed to be taking everything from me, my independence and my pride.

I was angry that I couldn't run and play with my son in a field as so many other parents could. I was angry that walking in sand was harder than anything else for I was constantly trying to maintain my balance if I had to walk in the sand at the beach or playground. By the time my son was only 5 years old, walking any long distances couldn't be done without the use of my forearm crutches which meant when we went anywhere I couldn't hold his hand so I had to ask someone to go with me to help keep my son safe. I was angry that I couldn't be the protector that I should have been for my child, the child that depended on me for everything. I was angry that I had to change way I did things in order to take care of my child on my own by asking for help with certain activities.

I was angry because when looking for a new apartment, I couldn't risk taking a cheaper more affordable apartment on a third floor because stairs were getting to be almost impossible for me to walk up and down without difficulty. When looking at the apartments I had to think about the lay out and if the doors were wide enough if in case I needed to be in a wheelchair again that the doorways will be wide enough and if not was the layout crutch friendly. I was angry because I couldn't look at an apartment as how it might look with my furniture in it just to be cute but I had to look at it to see if I could make it safe for me should I fall.

I was angry because it seemed like things that I could do just years ago were becoming harder and harder to do. It was nothing that happened overnight but slowly until I realized one day that I just couldn't do something. I have lost the ability to do so much over the years that I can't remember those early years and it was nothing so vital that my life changed when I could no longer do them. It was just enough to know I couldn't do something any longer that made me angry. I was filled with frustration when things would not come easily as they once did so I had to figure out other ways to figure out how to do them. I was angry for it seemed as if things that should only take a few minutes to do something would take me two or three times longer.

I was angry when doctors told me there wasn't much new in the way of treatments for CMT, so basically everything I was doing was all I could do, unless I was willing to finally wear the AFO's full time or think about having my ankles fused. I was just too stubborn for I still hated the AFO's because of how I felt in them, even though I used them religiously while in recovery from the operations. This time though, instead of disliking everyone seeing me in them, it was because I felt unstable in them and worried about when I fell that I would actually break a bone. Not only did I feel uncomfortable wearing them because I worried about breaking a bone but because of the fact that my ankle rolled so much that I ended up with a bruise on the upper part of the calf that was huge and ugly. Yep I did try them. I was angry that I just didn't have many options it seemed to improve my life so that I could be more active with my son. As for the ankles fusion that wasn't something that I would ever think about for I enjoy moving my ankles too much in an up and down motion.

I was also angry at my own limitations plain and simple.

I know that it sounds like I was one extremely angry person during those years, but all these anger emotions took place over years and not at once. I can only hope that it wasn't visible in everything I did on a daily basis for then some people might not have all that positive memories of me from that time period. Sometimes I wish I could go back and redo that time, or talk to the young woman I was into letting go of all that anger for it really didn't help. Then again if I got over the anger sooner or never experienced it in the first place then I would appreciate everything I have now and what I am able to do.

It is perfectly normal to get angry over something that has been lost without a doubt, and honestly sometimes the anger still comes and overwhelms me. I might allow the anger to take over but I get over it quickly for I found that anger really does nothing but hold back the ability to enjoy life. I might get mad and curse when I have forgotten my fingernail clippers at home so I have to swallow my pride and ask for help opening the silly little stupid ketchup packet at the fast food joint. I might get mad at some stranger hovering over me when I have taken a spill for they think it is like the worse thing to happen and yet to me it is just part of everyday life, though I smile at them and thank them for the offer of help. And yes sometimes I get angry when I can't pick something up like I use to because my fingers don't work well. I might get angry for a moment but I move on and laugh about everything for I am who I am and I wouldn't change that for the world.

Everyone faces the anger phase when facing something so incredibly hard like a physical disability. So don't feel bad about being angry and yell at God if you need to, yell your head off in an empty room, do what you must in order to get past the anger phase. There is no time table how one a person should move through the different phases but the important thing is to continue moving forward for it does no good to dwell in the same place without trying to move forward. Anger can begin to eat away at a person to where the person become bitter and unpleasant to be around, but with forward movement even while being angry is still better than allowing your feet to stink lower in that quicksand of bitterness. Anger can also help a person grown if it is allowed to fully process through for anger is a wonderful teacher. As I said there is no timetable but you are the only one who can tell if you are working through the anger phase or wallowing in place in that anger, and only you who can move beyond the anger stage if you want when you are ready to move.

Frustration, and not anger, is something I feel each time my CMT progresses for there are changes that have to be made yet once again after I just figured out how to adjust to the last progression. I get frustrated when I have to swallow my pride to ask for help with something that I use to do be able to do not long ago and I know it is for the best to ask for the help now. I get frustrated when I drop change all over the ground and I only pick up the quarters because everything is just not worth the frustration in struggling to pick up everything else. So whether I am feeling anger or the frustration it is all short lived where I might growl, grumble and hit something (floor, table, wall) but then I move on beyond that moment. I need to move on because I could so easily be over whelm with the negative emotions that would take over my life and that was no life in my life to be angry over everything that now it seemed like I was.

I am so grateful to all who keep coming back time and time again in order to read more of my story. In my next post I am going to talk about all that I have learn to count as a blessing because I have adjusted and accepted my CMT.