I Am Disabled

by Tim on October 9, 2013

I am disabled. There. I said it.

And today is my 40th birthday.

And I’m coming out of hiding so that something good can come of this.

As you may have noticed, I have been absent for several months from blogging. I have popped up occasionally on Facebook, Twitter, and Instagram, but mostly I’ve been laying low.

And by laying low, I mean… well honestly, I’ve been in continuous pain. I suffer from constant migraine headaches. I’ve had fewer than 24 total pain-free hours since January. If I’m not completely asleep, I feel pain. Even sleep isn’t much of a respite because the meds I’m on regularly give me nightmares.

Silhouette of young man against blue curtains I stopped blogging because I didn’t want to face my new reality. I wanted to believe it would get better. I wanted to keep pretending that a cure was just around the corner, that the dozens of doctors’ visits would be enough. But now it’s time to face reality so I can move forward. It is reminiscent of our J-man’s Diagnosis Day, except this time it’s me.

They have some ideas about at least part of what’s causing the headaches, but other aspects of it are still a mystery. All treatments to this point have either barely helped or failed entirely. And I have a small army of good doctors trying to help me.

Each treatment has held the promise and hope that maybe this is the one that will stop the headaches and let me return to normal. Each time, that hope has evaporated. I feel like I’ve sung these refrains before in our J-man’s early days of therapy. But again, this time it’s me.

At a recent neurology appointment, we discussed the latest procedure that hadn’t worked. This should have been the one to fix it, but it didn’t. We talked honestly about how my pain is actually getting worse, the medication side effects are piling up, my body is unraveling, and my emotions are frayed.

And then he said a word I had never even thought about in reference to myself. I could not have possibly conceived of this word ever being used about me.

“I think it’s time that we look at this as a disabling condition.”

And even then it didn’t register.

A couple of minutes later:

“Now this may only be a semi-permanent disability, but since you can barely work you should consider filing the paperwork to go on disability.”

The jagged points of his words started to penetrate my mind.

I really am disabled, I thought. I can’t believe it has come to this.

I don’t know how to make my peace with this yet. I know it may not be forever, but it’s certainly going to go on for a long time.

I have gone from marathon runner to disabled in less than a year. These constant headaches have stopped my life cold. My business has all but fallen apart. I can’t do even half of what I need to do around the house. I’m now at my highest-ever weight. My ability to play with the kids and be the kind of dad I want to be for them has deteriorated badly.

I feel like I am often a burden. I can’t do my share around the house. More and more people are having to help me do things. I’ve put on a good show and hidden a lot of this from people, but I can’t anymore. I need this to be out in the open now.

Mary and I talked the other day. We are both at our absolute limit. We need help. And I don’t ask for help very well at all. We won’t survive without it, though. I know the first step is being honest about where we are.

There are turning points in our lives where so much changes. Diagnosis Day was that way for our family. And now this public statement of who I am becomes another turning point. I am no longer the person I was, and I don’t know yet who I am going to become.

But as he did with Diagnosis Day, our J-man is teaching me how to handle this new challenge. He, too, is, by any measure of the word, disabled. He depends on us and others for most every daily task. No one values him less because he isn’t able to do these things, though. He’s the embodiment of love as simply being who you are, not what you can do or not do.

I am trying to extend this grace to myself even as I feel like a burden. Mary is having to do much more of the daily chores and tasks of our family. Our finances are in even worse shape because I can work only barely, if at all.

I am learning to accept that I am loved regardless. I am struggling to find new ways to contribute to the daily needs of our family. I am trying to learn how to ask for help and accept the generosity of others when that help comes. These are things our J-man has already figured out. He is again my teacher at a critical turning point in my life.

And he is showing me one last lesson that I find myself clinging to now. Just because I am faced with many challenges and limitations, I can still have goals and dreams. They may be different than the ones I started with, but there will be great things I can still do.

I will still make that dent in the universe.

I have sought out people to help me discover what my new path will be. I have been reminded that the best way to find healing and support is to be open with your friends and the tribe of people who love you. They have rallied to help me. I can’t even begin to convey how much this means to me.

It has reaffirmed what I hold as a personal truth. Most people are inherently wonderful, and they want to help. You just have to give them the opportunity to help you.

I’ve decided to give myself a clean slate. It’s a new day and a new year. This is now my new life. And I feel strangely hopeful in the midst of the pain and fear. With the help of family and friends, I have overcome challenges before. And despite the fact that this challenge is perhaps greater than any before, I have faith that together we will find something wonderful to make of it.

Posts that hopefully are similar:

{ 8 comments… read them below or add one }

AJ Calabrese October 9, 2013 at 10:15 am

How incredibly poignant that J is now the teacher. As you have taught him, now he teaches you.
I hope by accepting the cards you have been dealt you are able to prosper and continue to grow, but never close the door to hope.
Have a happy birthday with you beautiful family.

Rrenee October 9, 2013 at 11:22 am

Tim,
You are very brave and such a pioneer in the field of communicating wholeheartedly. I am deeply moved and very prayerful for you and your family. Your journey is well chronicled and continues to give us new insight into your world, forcing us to be look at ourselves even deeper within. When one feels the need to complain – you always post something that gives me optimism, hope, smiles, outward chuckles and dreams to hold on to – Never, ever give up, that’s my motto and I encourage you to continue to be true to you and yours. You are definitely a sparkling gem and a ray of hope for many. If there is anything that I can do for you and Mary, please let me know. All the best. Renee

Tammy October 9, 2013 at 11:39 am

Tim,

Has your Neurologist ever mentioned the possibility that you have a Chiari Malformation or Ehlers-Danlos Syndrome? Do a little internet search and see if one of those sounds like you.

Miz Kp October 9, 2013 at 6:39 pm

Tim,
I am so so sorry that you are going through this. I wish there was something I could say that would make the pain stop. You are definitely in my prayers. I hope the doctors can figure out a way to help you and I hope that you and Mary can get the assistance that you need asap. Thanks so much for sharing.

Cherie October 9, 2013 at 9:39 pm

I’m so sorry for what you all are going through. Is there any way to help from afar?

JBM October 10, 2013 at 3:57 am

I am so sorry that you have so much pain. Migraines have had a huge impact on our family, and I can only hope that you find some peace.. and some relief. Sending you my best.

Kyeli October 10, 2013 at 5:41 pm

You are so brave, Tim. I’m very proud of you; I know how hard this was to write – and to share. Sending so much love to you. <3

ash October 17, 2013 at 9:50 pm

Hi

I hope you get the strength to endure this, you have answered a lot of my queries regarding my micro preemie girl Isabel, now , 7 .
So, thank you
Her K/1 teacher has a son who is non verbal autistic and disabled ,he also has terrible epileptic fits .Your blog helped me understand her a lot as a parent & a person,so thank you for that too.

Leave a Comment

Previous post:

Next post: