Monthly Archives: May 2015

Down But Not Out.

SO…… We thought we would write to fill you in on our lives and the progression or perhaps, lack of. Anneliese and I are together writing this as we both have so much to add over these past 6 or so months.

I would love to say we went to Cabo, Hawaii, LA, Washington, just simple places.  We haven’t quite felt comfortable with travel. A bit afraid.. Friends of ours offered their Tahoe Home for the weekend of Thanksgiving – which was unbelievable. Our first getaway ever in this situation – we even spent the weekend in Los Altos Hills recently. The simple things we so appreciate now. It can be 10 miles away – as long as the surroundings are different. So nice!!!!!

We haven’t written since last year. Reason?

Space……Pain….. Re-Group…. Life… Pain…. Adjustment.

We can’t even begin to explain the journey we have been on. This past year has been by far the worst mentally. Every day, every minute your mind thinks about your life previously. You don’t worry about dying every 5 minutes now. Life calms down and you begin to live and think. The dust settles – and people go away.

Family and friends go away, those you thought loved you – but decide to take this opportunity to abandon you. It’s beyond confusing, upsetting, hurtful, especially when I don’t understand why.  It’s beyond frustrating. Your adjustments at 45, when you knew a different life with your family and friends are devastating.

I get sad, when I hear my friends went camping/riding for the weekend.

I miss that. Racing,…..I miss that! Walking hand in hand with my wife, I miss that, Being independent, I miss that.

I get sad when I go to a pre-party at a friend’s for Supercross and in the parking lot some A-hole is a dick to me about my wheelchair. How can people treat those that struggle so poorly? It’s really hard to understand how you abandon those that you love in times like these? I don’t get how it happens – and can only hope this raises awareness to those out there that might see a disabled person and feels uncomfortable or doesn’t understand?   Maybe you are feeling bad about your day, hate your job, want to make more money, dislike your friends, life can always be tougher. There is always something much worse than what you are going through. It is our job to make a difference in someone’s life.

My friends and Family have made a difference in mind. Without them, these past 2 years would have been unbearable.

Amazing how life changes:

The circle becomes very small but that circle is strong and it’s amazing how they support us – no matter what the circumstances. I could text, call – or voice my concerns and you are there. Thank you to our dearest friends, you know who you are. Thank you to our friends for our wonderful getaway on Thanksgiving, a truly wonderful experience and so needed.

My daily routine is simple, Anneliese gets me up, I go to the computer and handle our personal stuff or I go to the garage and view what I think I might be able to do. I’m bored, depressed and truthfully sick of looking at these walls (even if they are re-modeled.) I search the Mustang Forums for ideas for my Mustangs. I make small talk with those online. My friends call, I make appointments for Anneliese or myself, I work on trying to find something to do. I lately, have been looking for a part-time job but I’m still searching…..

In January we decided to get the Hospital Air Mattress Bed for our last resort on my wound. It has proven to be a huge help. My wound has gone from, a Silver dollar to a Dime size. This last part of the healing that takes a long time to finally close At this point, I can see a light at the end of the tunnel.

I’m at a crossroads about my life and moving on. I want to but not sure how too.   We talked this evening about transportation.

We have a friend, Nick Pappas, who has the most incredible system adapted to his truck. Anneliese told me tonight that is what I need. I will feel like a human being and be able to go see my friends or to the store without help. We decided tonight to spend the money and have me become independent. I haven’t been this far advanced in my wound card to even consider this – but truthfully I’m very excited to be able to be on my own. I’ve wanted nothing else since my accident but to be on my own.

I want my independence in certain ways. I know that I will not be completely – but I can’t believe how much I took for granted in my life previously. I read something on Christopher Reeves website by Dr. Dan and I wanted to share it because it’s my life completely and how I feel.

………

I am often asked the most difficult part of living with a spinal cord injury, and my answer is always the same: it robs me of time.

In general, our society does not know enough about spinal cord injuries — in fact, I freely admit to being the same way prior to my accident. At best, our perceptions are formed through the most convenient of examples: select entertainment characters; designated ramps, automatic doors, and parking spots in our neighborhoods; or possibly, a personal connection to someone affected by paralysis. But these, particularly the formers, do not tell the whole story.

The loss of autonomic functions — not simply the inability to walk — robs people living with paralysis of time. The ongoing management of body temperature, sexual function, bladder and bowel shave hours off our days; sometimes full experiences from our lives; and if ignored, the possibilities of far more permanent loss.

The fact is paralysis alone will not kill me. The secondary conditions of paralysis, especially without steadfast management, can kill me, and, because an injured spinal cord struggles to communicate with the brain to operate a host of bodily functions most of us take for granted –too often, they do contribute to death.

Time is not on our side.

If this sounds like uncharted territory when discussing spinal cord injury, I understand. Explaining that I cannot walk is not terribly difficult because you can see it with your own eyes.

Explaining that my body cannot regulate temperature, sexual function, bladder or bowel, without some combination of supplements, medication, equipment, and strict timetables, that’s more difficult to understand given the general public’s current level of awareness.

A lot of folks don’t want to discuss the graphic details of acts that happen in the bedroom, or the bathroom, or the act of perspiration seeping (or not seeping) through your skin. Yet, no one can deny the important roles these play in daily experiences and personal health. For most people, these actions are simply a part of daily life, but for many people living with spinal cord injuries, these activities never stray far from the forefront of their mind. We never fully conquer secondary conditions. We manage them.

This is my life – I wanted you to read what I could not write.   This is my life and those with Spinal Cord injuries. This part is not often talked about but it sucks.   #reality

Anneliese wanted to say a few things as well,

Hello, Life has been really rough the pat 6 months, managing the family, job and Dave’s emotions. I worry constantly about everything. I thank our friends who help me get through everything. Our lives have forever been changed. We are working through these raw emotions that have been overwhelming lately. Dave and I are in family therapy. The counselor mentioned that Dave should have never tried to white knuckle this experience by himself. He waited too long for help.

Our lives have been such an experience since the accident.Our emotions on a daily basis – few can understand. Dave deals with so many intense emotions every minute of the day. He is angry, cries and can be irritable.

It’s been an amazing journey. It certainly awakens you to life and how fragile it can be. So many things have changed for us. We lost relationships near and dear in our lives with family members. It’s been a lesson in the “Real World” for our kids. They certainly don’t understand, nor should they have to.

We are almost 2 years into this. When some people think… just get on with it. I challenge you to get in a chair and live it for 12 hours. Learn how your 43 years of Independence ( and most importantly what he talks about above) is horribly hard, frustrating, depressing. You have no control over many things. It’s frustrating.

A Huge Thank you to all of our Friends and Family who chose to stick by us through this life altering experience. Without you, life wouldn’t be the same.

We Sincerely Love You!

Thanks for reading.

David

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