As Funny as a Brain Tumor! Part 15

The next morning, our last day in Disney, I woke up to my kids talking to each other.  I sat up in bed and just looked at them.  There voices sounded normal.  I couldn’t believe it. Matter of fact, I didn’t believe it. I put on the radio, it sounded normal. I was so excited and happy but I still didn’t say anything to my wife because I was afraid I was mistaken. What if it was still messed up?  About 15 minutes later I told my wife. I then shared with her the whole story about the prayer I had prayed.  She didn’t seem surprised.  I was shocked and in awe that God had actually performed a miracle for me and answered my prayer.  She just smiled and said “Of course, he does that all the time”. I just looked at her amazed at her faith.  “Not like this” I said.  We went home later that day and I was one happy camper.

For the last 5 years things have gone pretty smoothly.  Normal life stuff. Nothing to write a blog about.  I’m happy about that!  I don’t know the why behind all the things in this story and I doubt I ever will but part of me thinks this last story was so very important to me and my journey.  You see as you could probably tell as I told the story, I was growing increasingly more and more negative.  Many times I doubted if God existed .  Other times I thought “Well if he does exist, he’s kind of a jerk”.  Other times I thought “Well if he does exist, he could care less about me”.    I know many of you who are reading this might be thinking it was just a coincidence and God had nothing to do with it.  I just happened to pray that prayer the night before my hearing was to return to normal.  Believe me, many times I have even thought that myself.  But I keep coming back to that prayer that I said. I laid it all out like I never had before.  I told him that if I were to see him work immediately then there would be no question in my mind.  He did exist and he does care about me. He is involved in my life and working and moving.  The next morning, I woke up and was cured.  You might think it was a coincidence but I like to believe it was something else.
Since that time in 2005 life has been good.  My girls are getting bigger everyday.  I’ve had many fun and happy times with them. More than I can count.  I’ve had great times with my wife who is my best friend. We bought a house that we all love and feel lucky to live in.  I feel very grateful and fortunate.

I had someone ask me once if I had any regrets?  Would I go back and change something from my past if I had the power to do so?  Without even thinking about it I said “No”. I wouldn’t change a thing. Brain tumor, cancer, bacterial meningitis, Toxic Epidermal Necrosis, headaches, shunt and even depression.  Those things have all worked to make me who I am today.  They have all brought me to this place.  It feels good to be here.  I don’t want to leave this place.  I’m afraid that if I were to change one thing in the past then that would change where I am and who I am right now.  I like this place. No thanks. I’ll stay right here.

I’m not sure what the future holds.  I’m not sure if I’m out of the woods yet.  I pray daily that none of my girls take after me with health issues.  That’s my biggest fear.  Every time one of them says they have a headache I get scared.  I’m hopeful though. It’s out of my hands.  There is nothing I can do. About me and my future or about them and their futures. All we can do is the best that we can and at a certain point we all come to a point where we are to weak to handle things ourselves.  Some people never get to that point until they are lying on their deathbed.  Some people have too many of those moments through out their lives.  I do believe that if we can look at those moments with the right perspective we can learn a lot about ourselves and the people around us.  There were many times during this story that I thought I was cursed.  Now as I write this story out, I have a different view, maybe I am blessed and not cursed, maybe I am one of the luckiest people on earth.  I think it’s a matter of perspective.

Like I wrote earlier in the story, I’m writing this to those of you out there that will read it and get something out of it.  I’m not even sure what you will get out of it and I  have already received many emails from people who were touched, moved or inspired in ways that I had not anticipated.     I do pray for those of you out there that are in a dark place.  I’ve been there and know how  sad and lonely it can be.  I pray and hope that you can and will come out the other side and end up in a place that is good to be in.  A place that you yourselves don’t want to leave.   Take Care,    Steve

Neff Family

Steve & Brenda with Sarah,Melissa, Jillian and dog Tucker

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Steve About Steve

Steve Neff has been playing and teaching saxophone and jazz improvisation around the New England area for the last 25 years. He is the author of many effective jazz improvisation methods as well as founding the popular jazz video lesson site Neffmusic.com.

Comments

  1. Thanks Tim. I’m not sure how tough I am……..(my wife says I’m a wimp) I’m just trying to handle and deal with what happens to me. Thanks for the encouragement. Steve

  2. Amazing story, Steve. I could relate because I had my own health crisis for 15 years. Not as serious as yours, but incapacitating. I never got a clear diagnosis, but the concensus was that I was mercury poisoned from my dental fillings. I remember playing gigs so sick I thought I would die on stage. Very hard to blow tenor when you’re ill. Anyway, I truly hope your health issues are behind you. I enjoy your site. I’m about to release a sax instructional video myself called “Outside-IN, Modern Techniques for Jazz Improvisation”. Take care and all the best.
    Howard

  3. Michael Bard says:

    Steve,
    Your story is amazing. It is full of what life really is about…The tragedy of your medical circumstances and how you were able to overcome them, the love of your family and your children, the emotional turmoil you experienced and, finally, the peace that you have finally found.
    I am a surgeon and, as such, I have seen some bad things. Also, I and my family have had serious medical issues. So, i have seen it from both sides. There are a lot of stories out there but, something about your story and the way you have told it that has really resounded in me. Thank you for having the courage to share this with the world. I for one will be a better person having read this.

  4. Thanks Michael. I appreciate you taking the time to write. It’s an ongoing story as you probably know yourself. I could probably write a few more chapters from the past few years…………. Take Care, Steve

  5. Hi Steve,

    I came to your website looking for soprano mouthpiece reviews. Only after several visits, did I find the link to your story. Just finished the whole thing. Really amazing story. I trust you are doing well today.

    Your site is very helpful and has more useful info about saxes and mouthpieces and playing than any other I’ve found. It’s a grace for those who find it. Thanks for all the effort.

    Grace,

    Brett

  6. Hi Steve,

    just browsing through your wonderful site in search of one of your more recent mouthpiece tests (as I frequently like to do.. ) I stumbled over your story keeping me absolutely speechless! But what I really liked was that next to your honesty all through your medical horror trip you seemed to always keep a very dry and entertaining sense of humor!

    Well, anyway – your story touched me. Please continue doing what you do and all the best to you and your family!

    Heinrich

  7. Thanks Heinrich! I appreciate you taking the time to write. I have to go in for a MRI soon. Hopefully it will be uneventful. If not I guess I can add more to the story…………..Steve

  8. Hi Brett, Thanks for taking the time to write. I appreciate it. I am doing much better although I have had issues over the last 8 years and could probably add to the story……..I have to go in for an MRI next week so I’m keeping my fingers crossed. I always get worried what they will find when I have those scans……….

  9. Hi Steve – wow, just got through your story and it is incredible. I admire your strength in getting through it all and coming out the other side even stronger. You are making a wonderful contribution to the community with your site – the transcriptions, the reviews, the lessons. I’m glad you made it through. I feel you are providing testimony to God’s goodness and His plan that all things work together in the end for good, even when it is hard to understand in the midst of hard times.

    God bless,

    Trent

  10. Thanks so much Trent. Your post was very encouraging. I have to admit that one of my daughter’s went through a terrible health scare this summer and that was so much harder for me to handle than what I went through in the brain tumor story. Seeing my own young daughter going through something that bad is just gut wrenching for a father. I spent so much time in prayer and many times I was really mad and ticked off. Thankfully, I worked through all those feelings and my daughter is doing much better. I have no idea why we have to go through some of the stuff we do but I still believe in God and believe there is a purpose behind all of it. Thanks again for your encouragement. Steve

  11. Richard C. Torres, OD says:

    Steve:
    Thank you for that tremendous piece of literature. You should receive an award for it. Not too many people have the talent for writing as you have.
    Takes up sax in 7th grade
    Brain tumor
    Brain stem, no less
    Bacterial meningitis
    Follow-up brain surgery
    Diplopia due to IV cranial nerve affected
    Tegretol
    Vicodin
    Crazy thoughts with steering wheel and oncoming traffic
    Etc etc etc (I could mention other things)
    Like David Letterman might say: Wait… that was me in Dec 1994 – Dec 1995.
    Kept me away from my practice for one year.
    I’m an optometrist still practicing in New Mexico. Every day is a special day. I thank God for letting me appreciate the clouds, the sky, nature’s colors and just so many things that so many of us fail to marvel at.
    Thank you for sharing your wonderful story.
    Enjoy your family,
    Richard C. Torres

  12. Thanks for taking the time to write Richard. I know we all have our own stories to share. My events started in 1995 also so it looks like we were going through things at the same time………. Be well, Steve

  13. Dude…..I had no idea. Your life story is a great read. I hope none of the next few chapters include another visit to the hospital. Love your website, books and your mpc reviews. They have saved me a lot of time. You are a resource to the saxophone community. Thanks,

    Lorenzo

  14. Thanks Lorenzo,
    I’ve had a few mishaps medically since that story ended but haven’t felt the energy to post more chapters to it. Maybe in the future…… Thanks for postings and taking the time to say thanks. It means a lot to me. Steve

  15. Hi Steve,
    Thank you so much for sharing your story. I went through so many emotions as I read about your challenges. I feel so fortunate to have found this site as a result of wanting to learn more about saxophone mouthpieces. I just bought my first saxophone (an alto) on E-bay and it arrived 2 days ago, and I have no idea what I am doing, I just want to learn how to play a saxophone.

    I have been through many surgeries that were to repair damage from work injuries over the years. I was a bricklayer and stone mason for 38 years, and my injuries have taken me away from the trade that I love. I’m so happy for you that you have been able to continue with your passion for playing the saxophone, it sure looks like your blog is providing a wonderful source of encouragement to many people! I’m glad to be able to consider myself one of the many.

    I’m going to use learning the saxophone as a way to keep my hands and my mind active, which I need as a replacement for the pleasure I had for many years of spreading mortar and laying those bricks. I miss that sense of accomplishment that comes from building things. I don’t know how to read music yet, but I’m going to learn in spite of being an old dog in a lot of ways.

    Thanks for the book referral “Feeling Good ” by David Burns I just ordered it and I’m looking forward to studying it also, it might keep me from wanting to become an overnight sensation as a sax player! I too have that need to over do things!

    Happy Easter to you and your family!

    Blessings to you,
    Doug

  16. Jeff Carter says:

    Hi Steve ,
    I clicked on your story thinking it was an odd title cause I thought there was nothing funny about a tumor , then I started reading it and I tell you I don’t like reading much as my attention span is low , but your story just took me by surprise I had to read the whole thing , what you have been through and come out the other side ,
    I wish all the best to you and your lovely family
    Cheers Jeff

  17. Heiner Musiol says:

    Hi Steve,

    after “meeting” you many times in threads at SOTW, after listening to a lot of your great mouthpiece reviews I read the story of your via dolorosa for the first time.
    All the time while reading, I saw your lessons on the right, reading “Mastering the…..”
    I can’t help but saying I’m deeply impressed and humbled after reading which obstacles were put in your way and how you MASTERED those. You have my full respect and sympathy.
    All the best to you and your family, and I feel humbled again how open, personal and honest your report is.

    Heiner

  18. Thanks so much Heiner! I appreciate the feedback and the time you took to read the story. I’ve been thinking about adding a epilogue to the story as I have had continual health problems since the end of that story. The problem with these recent health issues is that they are chronic and no where as fascinating as a brain tumor, cancer, toxic epidermal necrosis, VT shunt, etc……… but they are still a reality for so many of us that have to live with them everyday…………..”Mastering” something in light of these chronic challenges is much more challenging I have found………..still trying though…………..Steve

  19. Hi Jeff, Thanks so much for taking the time to read my story. If you start laughing uncontrollably in the future you know what might be causing it now………..Take Care, Steve

  20. Hi Doug, Thanks so much for taking the time to read my story. I am grateful to still be playing but to be honest these last few years have gotten tougher and tougher. I think all these surgeries have taken a toll on me. I was talking to someone the other day who said they were turning 40 and felt like 50. I told them I’m 46 and feel like I’m a 70 year old. Aches, pains,etc…….I’m sure you know what I’m talking about with your history also……. I wish you well with the saxophone and if you have any questions feel free to ask. Take Care, Steve

  21. Wow Iam so touched by this story and your courage besides the fact you are a great musician and teacher . Good health for you and God Bless you and your family

    Doug Tessler

  22. Thanks Doug! I appreciate you taking the time to read it. Thanks for the blessings also. Take Care, Steve

  23. peter.rawlings says:

    Steve,
    All I can say is “Wow!”. I’ve visited your site for years, bought several of your books, many lessons – but I never read “Funny as a Brain Tumor” – it was riveting!! I must admit, reading the first few chapters I found myself laughing also, as you described situations with your girlfriend, job reviews, using the restroom, gigging, talking to Doctors, etc. (Not trying to be insensitive – I’m sure it wasn’t funny to you at the time – it was just so… funny to read).

    But, I also appreciate your honesty and vulnerability in sharing this story with all of us – including being honest about the anger you felt towards God at times throughout this ordeal – and yet, maintaining your faith. This truly is an inspiring story! Thanks for sharing!
    Pete
    (PS. Have you thought of writing a book? 🙂

  24. Thanks Pete. I appreciate you taking the time to read it. I know it is long………. I have thought of writing a book as many people have suggested it. Maybe someday………… Take Care, Steve

  25. Steve I took the time ( it was easy) to read your entire story. All I can say is that you should probably publish it because it is truly inspirational. God bless you and your family. Your story proves that belief in God and persistence is a great combination to overcome any of life’s obstacles…

  26. Christianne says:

    I’m not sure how I even ended up on this site, but clicked on it because my best friend had an MRI yesterday, and has a brain tumor in her frontal lobe. As I sit here now, in my office, I am waiting for her to call me and let me know how her 2:45pm medical appt. went. I am a nervous wreck, and just want to text her so badly, but feel quite selfish, as she certainly has a million and one reasons to not immediately contact me after her appt. is over.
    Your journey has been crazy and incredible and miraculous and unbelievable! What a survivor you are! Someday, I will share it with my best friend, when it is more appropriate (if you will).
    I feel helpless right now, but have been praying more than ever over the past 20 hours.
    Anyway, I hope you are doing well, and that your family is healthy and thriving!
    Thanks for sharing your story.

  27. Thanks for taking the time to read my story Christianne. I will be praying for your friend. I hope there will be positive things that come out of this hard to deal with diagnosis. Steve

  28. Steve, I’m from Argentina, so english is not my mother tongue. But anyway, I spend my time until 4 am reading your touching story.
    I came today to your blog by an “accident”, I am a sax player and I was traying to find some material about the michael Brecker style. After that I found your website and and I caught my attention the subjet “funny as a brain tumor” on the menu.

    I started to read And I couldn’t stop! Such a story (and in a “slow time” because my basic english)

    I just want to say, that you have a beautiful family, you are a great sax player, your blog is so much interesting. And It is good for me (just a person in the bottom of the world), just to know that somebody can fight trought this kind of challenges.
    Life is not easy…
    Faith sometimes is not enought
    Stories like yours, make you keep on trying

    Sorry for my bad english

    Kind regards from Argentina!

    Alejandro

  29. Thank you Alejandro! I appreciate you taking the time to read my story and write back to me. What you said is so true in that life can be so hard and at times our faith can feel like it’s not enough. I love that saying of Jesus in Matthew 17 where he says “If you have faith as small as a mustard seed you can move a mountain…….” It’s interesting because the disciples can’t help a boy with a demon and they ask Jesus why. He says “because you have such little faith……” Then he responds with “If you have faith as small as a mustard seed…….” A mustard seed is on of the smallest seeds so I take what Jesus to be saying is it is not so much a matter of how much faith we have but rather who we have faith in perhaps……….Our faith might not feel like enough at times but certainly whatever we are dealing with is not to big for God to handle and work through. That’s how I see it anyways. Take care, Steve

  30. Thanks for sharing your amazing story! I kept reading, though it was long. You have been through so much, more than most people. I am a saxophonist, too. I can imagine how you felt being told you wouldn’t be able to play anymore, and I am so glad you could continue to play.

    I have one thing to offer you, that may help you, as it helps most people. I don’t know to what degree. There is a very healthy kind of water made by a medical device from Japan that is now available worldwide. It makes water that is alkaline, antioxidant and more hydrating than other waters. There is research on it that show it has many health benefits.
    It is called Kangen water. Our body is about 70% water and our brain is over 80% water. Many people have experienced tremendous improvements in their health from drinking this water. I would be glad to share more information with you, if you are interested. You can visit my website http://www.drinkfreshKangen.com. I have more detailed information I would be glad to share with you.

    All the best and may every day be healthy and bright for you and your family!
    Hana Dolgin

  31. A truly amazing and terrifying story from start to finish. All I can say is hang in there. I love your website and i wish you the best of luck. See you over at Sax on the Web. Jimmylh is my name there.

  32. Steve

    Your story is unbelievable. I can’t
    Imagine what you went through. I myself went through a rough time with my wife’s pregnancy’s and then health concerns with my beautiful daughter. I wound up going through severe anxiety, depression and OCD with crazy intrusive thoughts. Definitely the darkest time in my life but I hung on to God the best I could. I remember being in that “dark hole” and physically unable to smile. I am a perfectionist as well and very hard on myself but with therapy I learned to let it go. I also read one of Dr Burns books as well as some great OCD workbooks.

    My favorite bible verse is Isaiah 41:10 “fear not for I am with you, do not be dismayed for I am your God I will strengthen and help you, surely I will hold you with my righteous right hand”

    The good thing is I’ve returned to playing the sax and am now working through your books. I jumped on this website checking out mouthpiece reviews. You’re a great guy and are helping more people than you will ever know with your story. All in Gods plan

    Hang in there
    Nelson

  33. Thanks Nelson! I’m sorry you had to go through that. That’s a great scripture! I wrote it down to think about. It is so encouraging especially for those of us who struggle with perfection, depression or fear………….Thanks for reaching out. Steve

  34. Thanks so much for your story. It was breathtaking to read. I’m glad you’re better and your playing and your way of making sense out of saxophone playing is amazing. Thanks again. I had headaches, and still do, for about 35 years and a physician here in LA gave me rizatryptan which is good but usually I don’t take it. I don’t believe in gods and if/when I get seriously I will prepare to die. Never be treated. I hate surgeons. I had a so called cancer operation in -92 in Sweden that I was persuaded to have, that left me with a permanently hurting neck and swelling around the eye. I’m glad you got out of your surgery alive. I’m already 70 so I can die ok. But I’m a musician like you. I ran a dance band in Sweden between 1988 and -92. During that time I got divorced and the relationship with my ex was so bad that I didn’t mind emigrating to the US. I had acquainted a girl from the US in -91 and we settled in LA. My ex hasn’t called me in 25 years. We have two great kids who have visited me many times in LA. I bought an alto sax 10 years ago and a tenor 5 years ago. I practice and record on two Boss 1600 CD. I’m getting better on the sax but I need a more soft spoken mouthpiece. Thanks for your story. It was breathtaking to read and be safe. The photo with you and your family is beautiful.
    Nick

  35. Thanks Nick! I’m glad you enjoyed the read. It sounds like you have quite the complicated story also. I understand not believing in God. I guess for me, I see so much order in the world that I can’t help but think that it was created and not just random chance. Of course others see more disorder and chaos so……….I appreciate your comments. Take care, Steve

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