Survivors SPEAK OUT! Heather Love Leffel
Donna O’Donnell Figurski
1. What is your name? (last name optional)
Heather Love Leffel
2. Where do you live? (city and/or state and/or country) Email (optional)
Toledo, Ohio, USA firstname.lastname@example.org
3. On what date did you have your brain injury? At what age?
I have multiple sclerosis (MS), which essentially is brain damage. I had my first symptom at 19 years old.
4. How did your brain injury occur?
Well, my mother and twin sister also have MS. I do believe MS has a genetic aspect to it, but as of now, they don’t know the cause of MS.
5. When did you (or someone) first realize you had a problem?
I first noticed my MS in 1999. I was at my son’s T-ball game. I looked into the sky, and suddenly my left eye saw white flashes, and a black lace went over my vision. This was my mother’s first symptom too. I knew in my heart I had MS.
6. What kind of emergency treatment, if any, did you have?
None. I went directly into denial without passing GO (LOL) (a Monopoly reference). I didn’t want to know I had MS, so I ignored every symptom I had. I was in complete denial.
7. Were you in a coma? If so, how long?
No, I was not.
8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?
I have done a brief treatment of physical therapy for my balance and walking, but I stopped going. I shouldn’t have, but I did.
9. What problems or disabilities, if any, resulted from your brain injury (e.g., balance, perception, personality, etc.)?
Oh my symptoms list is a mile long! I can name some major ones. I have issues with balance and memory. I have nerve pain that results in a burning limbs sensation. I also have excruciating headaches, blurred vision, vertigo, the “MS hug” (a tightening around the waist), spasticity, speech issues occasionally, and more.
10. How has your life changed? Is it better? Is it worse?
In some ways, my life is better, and, in many ways, it’s worse. I have met some of the most amazing and wonderful people through this disease. I’ve also learned to slow down and appreciate life, but MS has taken so much from me. I lost my job, my fiancé, friends, financial stability, and the energy needed to be the mother I always was.
11. What do you miss the most from your pre-brain-injury life?
I miss working and having the money to fully provide for my children all the things I needed and wanted to.
12. What do you enjoy most in your post-brain-injury life?
I most enjoy spending any time I can with my sons and also being an MS advocate.
13. What do you like least about your brain injury?
I least like what my having MS has done to my family, and I dislike the fear I have daily that I’ve passed the monster to my children.
14. Has anything helped you to accept your brain injury?
Honestly, acceptance happened fast for me – maybe because I knew in my heart for so many years that I had it, but was denying it. (I showed my first symptoms in 1999, but I didn’t break down and see a doctor until 2012.)
15. Has your injury affected your home life and relationships and, if so, how?
Yes. I lost my fiancé. The first year after my diagnosis was challenging. I had to stop working just three months after my diagnosis. That crushed me. I was going through depression. I was also having issues with trusting my fiancé, since he lived in another state due to the military. Long story short – my trust issues were justified. He cheated on me, got the girl pregnant, and secretly married her while with me (one year after my diagnosis and after seven and a half years together).
16. Has your social life been altered or changed and, if so, how?
Oh my, yes! I have no social life. The only social life I have is Facebook really. I’ve definitely isolated myself.
17. Who is your main caregiver? Do you understand what it takes to be a caregiver?
I am my own caregiver at the moment. My 18-year-old son helps me a lot, but I wouldn’t call him my caregiver. I absolutely understand what it takes to be a caregiver. It’s a hard and selfless thing for someone to do. Caregivers deserve the utmost respect.
18. What are your plans? What do you expect/hope to be doing ten years from now?
I hope to be married to a good man – someone who can look past my MS and see me for me. I hope to have a grandbaby. I hope my son is happily married and has an enjoyable life. I hope my youngest is enjoying college and living life to the fullest. Most of all, I hope and pray that neither of my children has multiple sclerosis.
19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.
The most helpful thing I can say to you if you have MS is to allow yourself to grieve for the “old” you when you need to. Let it all out, and then pick up the pieces and move forward. You must allow yourself to grieve for who you once were and to grieve when things change because with this disease you are ever-changing. Allow yourself to feel it, and then accept it and continue to be the MS warrior that you are!
20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?
My advice to others like me is to speak out. We need to understand that we didn’t choose MS; it chose us! MS is nothing to hide or to be ashamed of; neither is your MS story. To create awareness about this disease, we must speak about it. We must all raise our voices and be heard. One person can make change – it only takes one. Be the difference you want to see!
(Disclaimer: The views or opinions in this post are solely that of the interviewee.)
If you would like to be a part of the SPEAK OUT! project, please go to TBI Survivor Interview Questionnaire for a copy of the questions and the release form.
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(Photos compliments of contributor.)
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