I Wish I Knew: Thoughts from family members of those living with Spinal Cord Injury

Adaptive Canoe July D“I wish I had known that all the initial pain and suffering would eventually go away. I kept trying to figure out why this happened to us. No matter how much I fought, it would not change. Once I stopped, and accepted it, I found clarity and an ability to move forward.” 
-Niece

“I wish I had known how hard sleep deprivation would hit me. That is the hardest thing for me, that and my detest of bowel care.”
-Spouse
  • “We would come to rely on the goodness of others.”
    -In law
  • “We have experienced every, and any, horror story there is and have come through it stronger and more confident.”
    -Spouse
  • “I wish I had known about your organization (the Greater Boston Chapter of the NSCIA) a long time ago.”
    -Sibling
  • “How I would want someone who was in the same situation to come to the house and help us figure out how to do all this.”
    -Spouse
  • “I wish I had known what the process was for getting my brother a wheelchair.”
    -Sibling
  • “I sure wish someone along this journey had helped us a lot sooner. I am grateful we came along your organization!”
    -Sibling”
“The bottom line in a quadriplegic’s life is to be prepared…meaning always have the proper tools on hand and a charged cell phone with the needed numbers in your contacts.”
-Spouse
  • “I had one of the better case managers, but I had to find out so much on my own.”
    -Parent
  • “I wish I had known how important it is to be assigned a case manager at the insurance company.”
    -Parent
  • “The local hospital ED and ICU would not know how to care for a quadriplegic.”
    -Parent
  • “I still wish I knew the easiest and fastest way to get housing so that my brother can live independently.”
    -Sibling
We love you, Daddy“How my sister would save me.”
-Spouse

“‘If it can go wrong it will.’ The lesson here is not to go crazy but to remain calm and solve the problem at hand. It can be anything from a urine bag leaking just when you’re about to meet friends to the 350 pound power chair not operating properly.”
-Spouse
  • “How hard it would be to find a mental health doctor who could understand my 23 year old son who has quadriplegia.”
    -Parent
  • “How to meet couple who had a husband\wife who has quadriplegia.”
    -Spouse
  • “How to find qualified PCS’s in New Hampshire.”
    -Spouse
  • “Dysreflexia is real and the ED doctors did not know what to do.”
    -Parent
  • “It is hard to get the insurance company to pay for the right wheelchair….even 5 years later.”
    -Parent
  • “PCA’s call in sick some days and cancel in snow storms.”
    -In law
Brian's Family“How long it would take to change my husband, put his boots on, get him dressed, empty his bag, put him in the Hoyer lift, do the rehab, put his arm things on, be sure his feet are correctly placed on the foot rest, that his shirt needs to be smoothed out, to sit him straight in the chair, keep his spirits up, the constant fear of bed sores, and sleep deprivation.”
-Spouse
  • “The pills would fall out of the pill box and we would have no idea what they were. Go to WebMD to get pictures and descriptions.”
    -In law
  • “I wish I had known that the transition home would unleash all our pent up anger and exhaustion.”
    -In law
  • “We would need 10+ white towels and face cloths for continuous use, bleaching and washing.”
    -In law
  • “I wish I had known transportation would be so difficult.”
    -Parent
  • “I guess coming from a caretaker/proxy prospective, I wish I had reviewed the Spinal Cord Injury Resource book from the very beginning of this ordeal.”
    -Sibling
  • “You have to be a team to beat the odds and move on to live the life you now own.”
    -Spouse
“Creativity is everything. Last Labor Day we flew to London and took a spin on the famous London Eye, the oversized Ferris wheel on the banks of the Thames River. We have improvised our way onto a gondola to the top of the Olympic mountain at Squaw Valley in California. That was the first tear of joy my quadriplegic husband shed with glee!”
-Spouse

“This injury is by no means fun and games but a challenge and a life altering event like nothing else. There are no rules because the game changes from moment to moment.”
-Spouse

We would like to extend a special “Thank You” to GBC members for sharing their thoughts.

The information contained on this page is for educational purposes only. It should not replace advice of a medical professional or replace medical care. This page has been produced as part of the Spaulding-Harvard SCI Model System and is intended for those with Spinal Cord Injury.

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