SCI Awareness,  Wheelie True Stories

A New Normal

A look back on our first year

Chelsea here – I met Colleen in the summer of 2019. Her husband, a respiratory therapist and avid outdoorsman, was injured in a hunting accident on April 18th, 2019. My hands were shaking as I clumsily dialed their phone number to 1) introduce myself and 2) to ask them to be the subject of my next film. The team and I wanted to document a first time wheelchair user and their first year rolling into this new life. After a few years in documentary filmmaking I have learned one important thing, if you are nervous as hell to talk to someone, ask them a question, or in this case ask Dan and Colleen to share their lives and journey with us, you do it. If it scares you it is the right decision. Little did I know picking up the phone that day would change the trajectory of MY life. Colleen has become a dear friend and more importantly, a teacher of life’s most meaningful lessons. Watching her share her grief, pain and happiness through the transition into this new life has been nothing short of amazing. This past April was Dan’s one year chairversary and Colleen has shared with us her feelings and thoughts looking back one year.

Q. Who are you, what makes you tick? 

I am a curious person who loves to figure stuff out. I find that the more I know about something, the more relaxed I feel. I am a planner so, not so great with spontaneity or a lack of preparedness. I dislike unnecessary chaos.

Q. Tell us about your journey this past year? 

If I were to choose one word to describe this past year, it would be ‘surreal’. On April 18, 2019 my husband sustained a spinal cord injury that left him a complete T4 paraplegic. I received the following voicemail from Dan’s brother while I was at work: “Dan’s been shot in the shoulder and he can’t feel his legs.” From that moment forward, my sense of time was skewed and details of my life outside of how Dan was doing were irrelevant. My busy and demanding job didn’t matter to me, nor did anything other than what was immediately in front of me. Unfortunately, what was immediately in front of me was terrifying and puzzling. It has now been one year and I still experience surreal moments; but, I have come to a place where the weight of loss is being balanced by the weight of gratitude for a new perspective, one that I am embarrassed to admit I never had before and by new friends who fill my heart with joy. 

Q. What are some challenges you faced during this time and how did you overcome them? 

Some of the challenges that came were easily overcome while others linger to present day. Dan’s brave and immediate acceptance of his paralysis was huge for what lay ahead for both of us. I knew nothing about paraplegia, other than it meant the loss of use of both legs and life in a wheelchair. I didn’t know what complete and incomplete meant or what the ASIA scale meant. I also did not know that a T4 injury was different than a T12 or C5 injury. I was so naïve to it all. Dan had patients who were either paraplegic or quadriplegic but his focus was assisting with breathing and coughing so even his scope of knowledge was limited. Dan’s medical knowledge and professional comfort in a hospital setting and my ability to soak up and process new information was what really helped us during the first weeks and months following Dan’s injury. Dan was very clear about his ability to direct his own care when required and the medical staff readily accepted his suggestions. This empowered both of us and reduced the fear that is so often associated with the hospital setting. The medical facts were relatively easy for me to understand and accept.

Telling our kids that their dad would never walk again was one of the most difficult things I have ever had to do and that says a lot because my life has been anything but easy. I had to do it over the telephone and they were an 8-hour drive away from me. I couldn’t hold them while they cried and they had to just trust me that their dad was going to be okay. They were both so brave and so helpful and have made me very proud.

One of the challenges that I still struggle with is that of loss. I am still mourning so many things. I miss Dan being able to come up behind me and give me a hug and kiss my neck. Also, I used to admire the design and romance of staircases, but now I fucking hate them and you will too.

Q. What has given you hope, happiness or clarity over this past year? 

Dan gives me hope, family and friends give me happiness and faith that this is all part of a plan gives me clarity.

Dan’s attitude gives me hope because he tries so hard every day to live in a body with legs that he can no longer communicate with.

Without a doubt, friends and family are at the top of the list for what brings me happiness. We have had so much support from loved ones, from our places of work and from complete strangers. My sister Jo and her husband Gerad stepped into our lives and took care of all of the things that we weren’t able to. I don’t know how they juggled their daily lives while taking care of ours and renovating our house, but they did. They are amazing and without them, I know I would have drowned.

What followed for us after Dan’s injury was nothing I could have imagined. The outpouring of love and support from a peer group of people living full lives in wheelchairs was a godsend. When I reflect, I can see that the connections were planted long before Dan’s injury. One of Dan’s patients played a big role in how Dan accepted his injury. Dan thought of him minutes after he was shot and this young man’s courage and positive attitude, that impressed Dan in the years prior to his own injury, gave Dan the encouragement he needed as he lay in the forest not knowing if he would live or die. What we would later learn is how William belongs to a pretty fantastic army of humans who help each other through challenges many of us will never know. They welcomed us into their gang and in a very short time, I knew that one day, everything was going to be okay and that no topic was off the table for discussion. They have taught me so much about the importance of being open about life’s challenges and whenever possible to laugh and move on. Chelsea has become a sister and really one of only a few people who will jump in and grab Dan’s chair out of the car or give Dan a little push up a steep ramp. She does it naturally and I appreciate her comfort and ease in showing me the ropes of this life of doing blue jobs while not stripping our partners of their pride and self-worth. Thank you Chelsea, you are a Jedi. 

Q. What advice can you give a spouse whose partner has recently been injured? 

Well, songs are going to make you cry, your heart is going to feel like it is breaking all the time and you are going to have so many questions and fears that will keep you awake at night. My advice is to embrace your power to advocate for yourself and your partner. Don’t hold back if you have questions and listen to your intuition if things just don’t feel ‘right’. Engage with others as much as possible. It will be uncomfortable, but trust me, you are going to need people. Even when you think you don’t need people, you need people. If your partner is still in hospital waiting to be transferred to a rehabilitation facility, accept any help that is offered. You have a long road ahead of you and you can’t let yourself burn out before the really tough stuff starts. If your partner is in a rehabilitation facility, learn everything you can that will help both of you when you leave. It is scary to think about going home but you can do it. The fear goes away. If you and your partner are back at home or in a new home because your old home wasn’t accessible, find people to connect with and step outside of your comfort zone both physically and mentally. You will be glad you did. Take care of yourself and don’t forget who you are. It is easy to lose who you are when most of your energy and that of people around you is being invested into your partner. I did put me on pause for a long time and am slowly finding myself again. I don’t regret pressing “pause” or wish I did anything differently. However, I am grateful that I am finding my way back to my own identity and accepting that I have changed too. Most importantly, believe that everything is going to be okay and know that you are not alone.

Q. What does the future look like for you and Dan?

Our future looks better than I thought it would. Right after Dan’s injury and for the first few months afterward, I thought he would need constant care and that our bedroom and bathroom were going to be a version of those at GF Strong. I could not have been more wrong. Our bedroom and bathroom are functional but not medical. Dan is very independent and I naturally assist him with things just because that is my personality, but he is very capable of living independently. Sadly, Dan won’t return to his same job role, but I believe he will return to doing something in the field of Respiratory Therapy eventually.

As for me, I am not sure if I can return to the type of work I used to do, but I am positive that I will find something meaningful when the time is right. Until then, we will continue to surround ourselves with positive people and keep rolling forward on this path, with new obstacles, as gracefully as possible. 

Chairversaries, as we like to call them, are for the Wheel Loves too. In Colleen’s case, Dan’s represents the day her life changed forever as well. While a spouse is extremely busy working through rehab and rebuilding their health and new life, a partner has time to think, what will life look like now? Will we get through this? Will everything be okay? So on chairversaries we celebrate the Wheel Loves too. Yes, we say celebrate because today means you’re on your way; you will be okay. You’ve come so far and your living a life full of love with your partner who survived.

Pushing on…

Colleen

 

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