Asking for Help: Not wanting to be a burden is a natural response, but asking for help, while difficult, is essential. Melanie strives to give back to her caregivers with insights and seasoned counsel, while they are providing physical help.
Caregivers: It’s important to surround yourself with caregivers who are there – honestly and constantly – to advocate for you. Its important to feel secure and not feel alone.
Crying: Melanie cries a lot more now – for many reasons. We can all gain from her insights about the benefits of crying.
Death: This is a profoundly powerful segment. ALS is fatal. Melanie describes her journey as healing without a cure requiring a re-evaluation of all her beliefs about life. With searing honesty, she shares her feelings about death and life and the relationship between the two.
Qualities of a Good Caregiver: Initially Melanie had no idea what to look for in a caregiver, which is why she feels its best to go with an Agency to help open up that world. The most important quality of a caregiver is the ability to see all of you.
Relationships with Partners: Melanie views her partner as the unsung hero of this journey. Amidst the many challenges they have developed an intimate friendship, based on a whole new reality. Throughout it all, she realizes that he also needs to feel loved – great counsel for anyone in a close relationship.
Relationships with Young People: Young people (teens, 20s) sometimes have trouble knowing how to be around Melanie. Her solution is to give them a place where they can feel need and encourage the opportunity to be themselves.
Seeking Support: After initial apprehension, Melanie went to the ALS Clinic which has helped her understand the disease much better. She is now involved with the Temmy Latner Palliative Centre, which has provided tremendous medical and emotional support. She corrects the classic misunderstanding about when one should start with palliative […]
The BiPAP: Initially, Melanie resisted using the BiPAP (assisted breathing device), because she didnt want to acknowledge that she needed help breathing. Now she knows that the BiPAP allows her to speak, breathe, talk, laugh – to be who she wants to be. Its an easy-to-use tool to support her […]
The Most Important Relationship: For someone with ALS, the most important relationship is with yourself, which means trusting yourself to do whats right. Acknowledge the many emotions such as pain and longing, but channel that into different energies and new ways to appreciate life.
Who is Melanie?: On the surface, we see someone in a wheelchair, with a breathing tube and a raspy voice, but there is so much more to Melanie – a beautiful woman who is vibrant, exciting and deeply insightful about her condition.
The Diagnosis: Melanie vividly recalls the moment when the neurologist confirmed the clues of a previous years fears that something wasnt right. She describes her reaction as a scream inside – a scream that is still there but not as loud.