The last time I wrote on this blog was three weeks ago. I don’t have writers block but have been dealing with a lot this month.
Dealing with my diagnosis.
This one has been energy and time consuming. And a learning curve. I got anaemia in January this year and this activated my ataxia. I’ve always had it in my body but previously the symptoms were virtually impossible to notice.
I started taking iron supplements late last month and thought the increase of blood in my body would take away my ataxia symptoms but it has not. My energy levels are back but now I walk funny and my balance is way off.
This may be my new normal and it was hard to process. I started imagining people can immediately see I have a problem and a friend told me this weekend that it was all in my mind. I thought I don’t even care what people think but apparently I do. So weird. Was I OK with having ataxia as long as I appeared normal? I have no clue; I am processing all these emotions.
Dealing with others.
In addition to dealing with my jumbled feelings, I have been forced to deal with other people’s opinions of how I should behave FOR THEM with my diagnosis. One previous diehard fan told me calling myself #theafricanataxiagirl made her uncomfortable. Like really. You are uncomfortable. Well get over it because I will not bend to make you feel comfortable. Whatever the hell that means.
So you perceived me as star blogger you could admire but you think I am flawed now? I am still the person you looked up to.
I had to block 3 people on Facebook. I never do this. I usually rise above any pettiness and I’m always the bigger person.
I blocked three people in the past three weeks. This is insane, but the underlying theme all 3 people shared was an extremely self-centered nature that just wanted more and more for themselves. A conversation with one of them would leave me drained and wondering how someone could be so self-absorbed. Relationships which were one sided; not mutual.
I could not do it. This was emotionally upsetting for me and it knocked me off keel for a few days.
Talking about friendships.
Ataxia is like molten lava that scorches any impure friendships. Human beings are not perfect and I have people in my life who I feel are superficial friends or surface friends….friendships with no depth. Relationships that drain me, that draw so much from me, but return very little.
We allow ourselves to be in spaces that do nothing for us, for the sake of keeping the peace but at the expense of our souls.
Well the normal healthy me could prance around being a social animal, not receiving much and being OK with it.
The ataxia has halted that.
If I currently expose myself to you, know I feel safe around you.
What does that mean?
I will only hang out with you if I know you reside outside yourself. Many people reside in the me, me, me residence.
I need to be around somebody who will want to know how the ataxia is making me feel. That I can’t do stairs. That if something happened to me they would do something about it. That someone won’t tell me the ataxia is in my head and want to move on to talk about their experience.
This weekend I hang out with my friend Grace who I met a few months ago.
I’m not even requiring people to be perfect right now.
But Grace had previously offered to buy me groceries when my anemia was at its worst. She invited me to her home on Saturday. For me to leave my home means a lot. I am afraid of fainting in the streets or something. I went to see her and we even went to her church on Sunday.
I remember us approaching the building and she exclaimed, “OMG, I forgot there are flights of stairs leading to the church.” I told her I can manage them as long as there is a handle. When I started my slow descent up the stairs she said, “Let me walk behind you in case you fall down.” I did not.
We got a lift to my apartment and we took a million pictures in the garden. Grace is a fashion blogger. I know my lipstick and fabulous Zara dress does not scream ataxia but Grace knows I had to lean against a bench, sit down to take my pictures, sit on a bench to take her pictures and so on.
The ataxia has made me as self-absorbed as many people I entertain in my life.
I have cut many connections because I felt if I fell on the streets would you bother picking me up or call the ambulance? Or even spend some time with me in hospital? The normal healthy person can fluff you up all I want but the new me will eliminate the fluff in a minute. Do I feel safe in your hands? Yes or no answer.
I am also known to be funny and an encourager. No matter what pit you think you are in I can ALWAYS HELP YOU find a way out. Now boring me has ataxia. So I can’t do my happy, funny encouraging routine. Actually I still can, but maybe a how are you? how are you feeling? would be nice. Could we for once not talk about you but about me? For at least a few minutes.
I’ve become more self-centered although I am still able to think about others.
My automatic response to having ataxia was not to ask God to heal me. His will is supreme in my life. Maybe he realized I needed to be a little more self-centered and was not taking care of myself. Maybe he wanted me to end some relationships. I’ve done that. It was ugly.
One of my supposed to be friends told me she has no time to read my stories. Breaking up with that person really hurt me. But if you have no time neither do I to lift you out of the one billion pits you find yourself in and run crying to me “the free therapist.” Therapist office closed.
This past 3 weeks has been icky. But my friends and I changed a few people’s lives in Kenya. See you tomorrow.