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

  • “It is not as scary as you think it will be. The grind gets easier.” 
    -Injury level C6
  • “Stretch more, move more, and stay hydrated.”
    -Injury level C6
  • “Always have on your person a way to contact someone.”
    -Injury level C6
  • “To be aware of my frustrations and anger. It is okay to have those feelings, but try not to direct them at your loved ones.”
    -Injury level T12
Wheelchair Basketball“What benefits are out there that I could take advantage of: financial, medical, school assistance, home modifications, assistance with purchasing products.”
-Injury level T10

“Most tetraplegics easily gain weight within their first 2 years of injury and they can quickly become too heavy for standard durable medical equipment.”
-Injury level C7
  • “How hard it would be to go back to my familiar home.”
    -Injury Level C3
  • “What are these pills and why do I take them? Do I need them?”
    -Injury level T10
  • “Most things are the same, it just takes longer.”
    -Injury level C6
  • “Always look for different and better ways to do stuff.”
    -Injury level C6
  • “Move away from adaptive equipment. Let it be a safety net, not a crutch.”
    -Injury level C6
  • “Everyone wants to help so let them. Only ask for help if you need it, not because it is convenient.”
    -Injury level C6
Another GBC Day on the water“Most tetraplegics easily gain weight within their first 2 years of injury and they can quickly become too heavy for standard durable medical equipment.”
-Injury level C7

“The thing I wish I knew is that people sometimes take out their anger and frustrations on those who are closest to them.  These are the people who are there for them, acting as their support system. This is a natural response in adverse conditions.”
-Injury Level T12
  • “How fortunate I am to have so much support from family and friends.”
    -Injury level C7
  • “You have to be your own advocate……for everything. I sort of knew that but not to the extent that it has to be done.”
    -Injury level C7
  • “Try to be aware that there will be an adjustment period after discharge.  This accident or injury didn’t just happen to one person, but it happened to their loved ones as well.”
    -Injury level T12
  • “I wish I had a better understanding of the cause, long term effect, treatment and cure for spasms.”
    -Injury level T8-10
“We live our post SCI lives with the same family and friends we had before. It’s okay to lean on them in tough times, but be careful not to lean so hard that they no longer want to be around.”
-Injury level T12
  • “I wish I had known that I would have ongoing pain even though I cannot feel anything.”
    -Injury level C3
  • “I wish I had been given a better understanding of my medications and why I was taking them.”
    -Injury level T6
  • “I wish I had known how important it is to know your own body and notice even the slightest changes. They can mean something.”
    -Injury level C7
  • “I wish I had known more about transportation options for those with a high level spinal cord injury.”
    -Injury level C7
  • “I wish I had been told about all the activities for those with a spinal cord injury.”
    -Injury level C7
  • “Always think 3-4 steps ahead. Have backups to your back ups. Stuff will happen.”
    -Injury level C6
Hiking MR“Insurance companies differ in what they will, and will not, pay for. I wish had known to ask ‘Is this covered?'”
-Injury level C7

“To hire PCAs, you could search on a website called www.rewardingwork.org”
-Injury level C5
  • “To question what the doctors and nurses were telling me.”
    -Injury level C7
  • “Every town has a Housing Authority that somebody with a disability can contact for housing availability and to get added to the list of availability.”
    -Injury level C4
  • “The schedule for all the upcoming education seminars that have to do with spinal cord injuries.”
    -Injury level C5
  • “The smallest barrier for the able body is a huge barrier for the disabled.”
    -Injury level C7
“For those looking for inexpensive ownership of a wheelchair van, notify Lowell Regional Transportation Authority. They auction vans annually. One has only to submit a reasonable offer. I have gotten some very good deals from this.”
-Injury level C4
  • “You can still be a contributing member of society no matter what ails you.”
    -Injury level C4
  • “Never give up on the possibility of love.”
    -Injury level C4
  • “Network, all the time. Talk to people everywhere you go.”
    -Injury level C7
  • “People get busy with their own lives. You cannot wait for them to keep up the relationship. You have to find new ways to connect.”
    -Injury level C5
  • “The smallest barrier for the able body is a huge barrier for the disabled.”
    -Injury level C7
  • “What publications should I get, or read, to see the latest: products, research, message boards for support groups.”
    -Injury level T10

 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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